Docstoc

Channeling_In_4_1

Document Sample
Channeling_In_4_1 Powered By Docstoc
					     Channeling In
     T h e     Ne wsl ett er            of     th e     IDE A         L ea gu e



IDEA League Participates in AES Conference                                                              Volume 4, Issue 1
By Karen Glenn
                                                                                                        January 30, 2008
The American Epilepsy Society    need for multidisciplinary         Verona, Italy; the possibility of
held its annual conference on    care; and the importance of        assisting, in conjunction with
December 5-9, 2008, in           appropriate supports. As Joan      Nutrical, in the production of a    Inside this issue:
Seattle, Washington, USA.        presented these points, her        DVD promoting the ketogenic
Several thousand neurologists    slides showed the faces of         diet; and the beginnings of a       Encouraging Words      2
and other medical and            children with Dravet               tissue donation program in
research scientists from         syndrome. Said Joan of this        collaboration with Dr. Alicia
around the world attended        extraordinary opportunity, “It     Goldman of Baylor University.       Credit Card Program 3
the five-day event, which        was a wonderful experience to      There was also much interest
included a focus on SCN1A-       be included in this                shown in future Grand Rounds
related epilepsy syndromes,      symposium. The speakers            presentations to further            Fishing for a Cure     3
particularly Dravet syndrome.    were marvelous and the topics      educate neurologists about
Representatives of the IDEA                                         Dravet syndrome.
                                                                                                        Dravet Quilt Project 4
League were among those
present, staffing a booth for                                       While at the conference, the
the organization, meeting and                                       IDEA League also hosted a           In the Spotlight       4
greeting physicians, and                                            dinner presentation that
attending key lectures. This                                        included speakers Drs.
was the third time that the                                         Charlotte Dravet and Angela         Meet the Board, pt.2   5
IDEA League has participated                                        Black. The purpose of the
in the AES Conference.                                              meeting was to promote an           Dinner Meeting         6
                                                                    important initiative of the
This year, in addition to                                           organization. For more on this
educating medical                                                   particular event, please see        Play Benefit           6
professionals as an exhibitor,                                      the related article on page 6.
the IDEA League had the
                                                                                                        Living with Dravet     7
remarkable opportunity to                                           In addition to the medical
share our collective point of                                       events, a Dravet syndrome
view of living with Dravet                                          gathering was held for IDEA         Madi’s Friends         7
syndrome with hundreds of                                           League members living in the
pediatric specialists during     Top: Board Members, from left      greater Seattle area. Several
one of the plenary sessions.      to right, Scott Crossland, Joan   families met for breakfast at       In Loving Memory       8
Joan Skluzacek, Founder of       Skluzacek, Lori O'Driscoll, Kim    Warwick Hotel, where they
the IDEA League, was invited       Skriba and Laura Cossolotto.     had the chance to meet and          Father Advocates       8
by Australian epileptologist        Bottom: Drs. Bill Catterall,    get to know one another.
and IDEA League Professional         Ingrid Scheffer, Charlotte
Advisory Board Member Pr.          Dravet and Peter De Jonghe       IDEA League Board Members           Butterfly Bash         9
Ingrid Scheffer to be one of        along with Joan Skluzacek.      who attended the conference
this year’s presenters. Her                                         included Laura Cossollotto,
role in the session on SCN1A     extremely pertinent. The           President; Joan Skluzacek,          Mark Your Calendars 9
epilepsies was that of sharing   professional audience              Founder; Dr. Angela Black,
a parent’s perspective.          seemed very receptive to           PAB Chair; Lori O’Driscoll,         In Appreciation        10
                                 learning about Dravet              Secretary; and At-Large Board
Hoping to represent as many      syndrome, encouraging              Members Kimberly Skriba,
members of the IDEA League       optimism for improving the         Scott Crossland and Michelle        Dates to Remember      10
as possible, Joan surveyed       outcome for our children.”         Townsend. Said Laura
the group prior to the                                              Cossolotto of the experience:
conference and identified four   The AES Conference brought         "The AES annual meeting was
themes as to what parents of     with it the beginnings of a        an exciting and productive
children with Dravet syndrome    number of other exciting           event. Meeting and hearing
wish pediatric neurologists      prospects for the IDEA             from physicians, researchers
knew. These included the         League. These included an          and other professionals from
importance of accurate, early    invitation from Dr. Dravet for     around the world, showed us
diagnosis; the need for open     IDEA League leaders to             promising and continued
communication between            participate as speakers in an      progress toward finding a cure
physician and caregivers; the    upcoming conference in             for Dravet syndrome.”               Our IDEAL is a Cure
    Page 2            Channeling In




                      E n c o u r a g i n g Wo r d s                 From Our Founder
                      By Joan Skluzacek

                      Upon assuming her new              any parent might smile. We           Clinical Research and
                      position this past fall, IDEA      smile when we receive                Comprehensive Care
                      League President Laura             thoughtful, meaningful               Network (CCR-CCN), for the
                      Cossolotto was interviewed by      support that effectively             treatment of Dravet
                      a newspaper reporter for an        addresses our concerns and           syndrome and related
                      article about her experiences      helps us feel that we and our        epilepsies. I feel so fortunate
                      as the mother of Michaela, her     children are cared for and           that our family has the
                      daughter with Dravet               connected. We smile when our         support and opportunities
                      syndrome, and also about her       children receive the                 provided by the IDEA League
                      leadership role with the           appropriate, quality health          family network. This
                      league. During the interview,      care and educational                 connectedness makes me
                      Laura gave a number of             resources they need to               smile. Learning about and
                      reasons why she felt lucky.        become their personal best.          participating in research
                      Afterwards, she shared with        We smile when we can live in         gives our family a sense of
                      me that the reporter found it      a climate of optimism and            optimism. We feel lucky
                      astonishing that Laura would       hope, in which we can                when we are aware of the
        What can      describe herself as lucky.         envision our children loved
                                                         and happy in the years to
                                                                                              dedicated people working
                                                                                              hard at clinical and
                      In a 2006 editorial,               come.                                laboratory research that will
possibly give us a    Exceptional Parent magazine
                      editor, Rick Rader, comments       It makes me smile knowing
                                                                                              help our children.

                      that, “Exceptional parents         that my son, Nick, has access        But my most powerful reason
    sense of good     have been smiling for years, to
                      the amazement and
                                                         to comprehensive,
                                                         multidisciplinary health care
                                                                                              for smiling is that I have Nick
                                                                                              in my life. Each of our Dravet
                      bewilderment of bystanders         from providers that are              children is a unique blessing
fortune, given the    and onlookers.” Why do we
                      smile? Certainly we have at
                                                         educated (or open to learning)
                                                         about Dravet syndrome at a
                                                                                              with his or her own
                                                                                              exceptional qualities. We are
                      least our share of reasons to      facility reasonably close to         fortunate that we get to
                      feel sad, fearful, frustrated      home. I feel lucky to be part of     share many smiles and
      challenging     and angry. What can possibly       the IDEA League project to           wonderful moments with
                      give us a sense of good            make this same level of care a       them.
                      fortune, given the challenging     reality for all of our families by
 diagnosis we all     diagnosis we all share?            creating regional Centers of
                                                         Excellence, part of our
                      We smile for the same reasons      proposed Collaborative
             share?

                      Walk for Epilepsy
                      The Epilepsy Foundation’s annual Walk for Epilepsy will be held on March 28, 2009, and Team
                      Dravet will be there! Team Dravet was put together by Kimberly Skriba and Lisa Smith and they
                      and their families, along with many others, will be packing their walking shoes and making the trip
                      to Washington, DC. Team Dravet plans on raising awareness for Dravet syndrome and hoping to
                      help find a cure for epilepsy. You can join Team Dravet and help the cause. Here’s how:

                      1. Go to www.walkforepilepsy.com and join the team! Lisa and Kim would love to have as many
                      people at the event as possible. There will be Dravet t-shirts, sweatshirts, hats and more that can
                      be ordered for the walk. And you’ll get to meet other families of children with Dravet syndrome.

                      2. Go to the link below and make a donation directly to the IDEA League. Your donation will go
                      toward helping families dealing with Dravet syndrome. Please note on your donation that it is for
                      the "Walk for Epilepsy". To donate, visit https://www.causes.com/fb/donations/new
                      cause_id=169986&fundraiser_id=16666734&m=a8965384.

                      3. Walk with your local chapter! Epilepsy Foundation affiliates across the US will be holding walks
                      as well. IDEA League member, Nina Hunt Ochtis has arranged for a team to walk in Houston, TX,
                      with half of the proceeds going to the IDEA League and half to the Houston chapter of the EF. Well
                      done Nina!
Volume 4, Issue 1                                                                                                                Page 3



Credit Card Program Benefits IDEA League
By Cathy Holt

Small, incremental steps can        credit card charges will be        support needed to continue
create big results! It's in this    sent directly to the IDEA          research and education for
spirit that Stephen Hollister       League. No administrative or       the early diagnosis,
and Mary Anne Meskis helped         service charges are deducted       appropriate treatment, and
the IDEA League partner with        from the donations.                cure of sodium channel
Capital One Credit card                                                epilepsies.                      The Telly the Tiger version of the
company. Capital One has            For credit card users, this                                         IDEA League Capital One credit
recently created the Charity        partnership creates an easy        If you are interested in          card. Telly is the mascot of the
Affinity Card Program               way to provide financial           applying for a Capital One                IDEA League.
designed to help individual         support for the IDEA League.       Charity Affinity Platinum
card holders contribute money       The Affinity Card also gives us    MasterCard with one of the
to their favorite charities. Each   something tangible that we         three IDEA League designs,       For credit card users,
contribution, though small and      can share with family and          please visit online at
incremental, can make a big         friends to promote awareness       www.capitalonecharity            this partnership creates
difference.                         of the League. It is advertising   program.com/idealeague.
                                    for our charitable organization                                     an easy way to provide
Through this new program, the       on a broad scale. There are
IDEA League will receive $25        three card designs to choose
for each new credit card            from and each provides an                                           financial support for the
application and account. In         easy opening to a
addition to this initial            conversation about Dravet                                           IDEA League.
donation, one percent of all        syndrome and the financial




Fishing for a Cure
B y P aula Lyles

Call me odd, but I equate           proudly represented the IDEA       When the competition got
fishing with love. Perhaps it’s     League by joining David and        close, David put the word out
because my grandfather              Edie in Virginia Beach as they     on sports fishermen blogs and
packed up seven                     received their awards and          helped champion the way for
grandchildren on weekends,          presented their check.             us to “beat those engineers!”
baited seven hooks, and                                                You see, this quiet, humble
removed the ones embedded           So why would a saltwater           fisherman is passionate about
in fish eyeballs and mouths for     fisherman take an interest in      helping to find a cure because
hours on end. He never even         Dravet syndrome? David and         he personally knows how
had a chance to cast his own        Bobby met nearly 20 years          devastating epilepsy can be.
line in because he was so           ago in the Outer Banks and         Although his nephew Connor’s      Little Haley Smith is dwarfed by
busy with all of us. Now that is    became fishing buddies. David      epilepsy is controlled by         members of Team Marlin Maniac
true love!                          and Edie were even in Bobby        medications, he still knows         and their impressive catches.
                                    and Lisa’s wedding. Years          how heartbreaking this
That’s why I am so excited to       passed and the two couples         condition can be.
read the Smiths’ story about        went in different directions,
their friends David Nova and        and then their paths inter-        David even went so far as to
                                                                                                        ...even more awe-
Edie Jett winning Angler of the     twined once again. David           put a wrap on his boat that
Year and Lady Angler of the         learned about the Parade           includes the IDEA League logo    inspiring is the fact that
Year for the American Striper       Magazine Giving Challenge          and a photo of Haley Smith.
Association. The win itself is      through an article that ran in     His hope is that other
amazing, but even more awe-         their local paper on January       fishermen will do the same.      they donated 10% of
inspiring is the fact that they     24, 2008, and made it his          Thank you David, Edie, the
donated 10% of their winnings       ambition to help the IDEA          crew of the Marlin Maniac and    their winnings (about
(about $4000) to the IDEA           League win the contest. Our        Fountain Boats--what an
League! On December 13,             cause became his cause, and        awesome awareness-raiser
2008, Laura Cossolotto; Kim         most days David called the         and fundraiser. Happy fishing!   $4000) to the IDEA
Skriba and her son, Ryan;           Smiths multiple times to           May you have an equally
along with Bobby, Lisa, Haley,      inform them where “we” stood       successful 2009.                 League!
Peyton and Parker Smith             at that moment in the contest.
       Page 4                     Channeling In




                                  Dravet Quilt Project
                                  By Kim Skriba

                                  In the Special Issue of             you would like. They are            Shop in Knoxville, Tennessee,
                                  Channeling In sent out this         meant to be a personal              USA. We want to thank her for
                                  past December, we introduced        representation of you and           taking the time to cut all those
                                  you to the Dravet Quilt Project.    your child. A $10 donation is       squares and donate them to
                                  This exciting endeavor is now       requested to help cover the         our children. Thanks also to
                                  well under way, but it’s not too    cost of the quilt, but this is      IDEA League member Brenda
                                  late to participate. We would       optional and no block will be       Farrell for her vision and
                                  like as many of our special         turned away for the inability to    willingness to assemble this
                                  children to be represented as       pay. If you have already            quilt and to Kim Skriba for
                                  possible. The Dravet Quilt will     requested and received your         organizing it all!
                                  be a wonderful way to raise         block(s)—thank you! Please
                                  awareness for Dravet                complete and return them as         To participate in this
                                  syndrome.                           soon as you can.                    wonderful project, or for more
We would like as many of our                                                                              information, you can contact
                                  Blocks for the quilt are 8” x 8”    The fabric for the blocks has       Kimberly Skriba at
        special children to be    squares of muslin and can be        been donated by Vivian Wright       kim.s@idea-league.org.
                                  decorated in almost any way         of Mammaw’s Thimble Quilt
     represented as possible.



                                  In the Spotlight
                                  B y P aula Lyles

                                  She’s sweet, upbeat and very        getting Haley’s story out and       When Lisa read the SCN1A
                                  easy to talk to! She’s Lisa         raising awareness for Dravet        mutation profile on the
                                  Smith, mom of Haley, Parker,        syndrome and the IDEA               internet, she says it was as if
                                  and Peyton. Lisa, Bobby, and        League.                             she was reading Haley’s
                                  their kids live in Virginia along                                       biography.
                                  the banks of the beautiful          Haley was born on August 20,
                                  Chesapeake Bay. Married in          2000, after a healthy               In September 2007, Haley’s
                                  1996, Lisa jokes that Bobby         pregnancy. Haley suffered her       genetic tests confirmed Dravet
                                  married her “because she            first febrile seizure with an ear   syndrome. With Haley’s
                                  would go fishing with him!”         infection at the age of five        diagnosis came a sense of
                                  With twin boys and a daughter       months; and although the            peace and acceptance and
                                  with Dravet syndrome, you can       doctors told them that febrile      more family support and
                                  bet Lisa doesn’t fish much          seizures were common in             compassion. Finding the IDEA
                                  anymore!                            young children, Haley was a         League in October of 2007
                                                                      bit younger than most. On           gave the Smith family people
                                  Thankfully, though, the Smiths      Mother’s Day of 2001, the           who truly understood what
                                  are good friends with the           Smiths life changed forever         they were going through.
                                  Marlin Maniac crew who              when Haley had a second
                                  donated $4000 in winnings to        seizure. From that moment           Haley, now age 8, attends
 The Smith Family: Bobby, Lisa,   the IDEA League (see related        on, Lisa describes going            Montessori school, though if
   Haley, Peyton and Parker.      article on page 3). Bobby owns      anywhere with Haley as              she had her way, she would be
                                  his own general contractor          stressful because of the            “following her dad around with
                                  business doing additions and        uncertainty of what might           a hard hat on her head and a
                                  remodeling. Lisa is a personal      happen.                             hammer in her hand,” says
  With Haley’s diagnosis          trainer and taught kick-boxing                                          Lisa. While she’s too cute to
                                  prior to being “benched”            Eventually, after multiple drug     be a contractor, she has the
                                  during her pregnancy with the       combination failures for Haley,     sweetest face one could hope
   came a sense of peace          twins. Lisa’s “Mommy time”          no success with the Modified        to see on fishing boats raising
                                  occurs before the sun comes         Atkins diet, and weekly ER          awareness for the IDEA
      and acceptance and          up when she works out. It’s         visits, the Smith’s sought the      League!
                                  her personal version of             advice of a fourth neurologist.
 more family support and          Prozac! She still does a little     It was Dr. Jack Pellock who
                                  bit of personal training for        suggested they start all over
                 compassion.      others, but is a full-time Tiger    and who recommended
                                  Mom caring for her family,          genetic testing for Haley.
Volume 4, Issue 1                                                                                                                     Page 5




                                                                                                         Michelle Townsend & family
Meet the Board of Directors, part 2
By Karen Glenn

In October, we introduced you      syndrome. GO TIGER                 currently as a Board Member
to six of our twelve Board         PARENTS!"                          At-Large. Most of her focus
Members. Here is your chance                                          has been on print materials,
to learn a little more about the   Patti Thistle lives in lovely      including pamphlets and
remaining half.                    Newfoundland, Canada, with         brochures, conference
                                   her three beautiful children.      materials, reports and the
Michelle Townsend serves as        Her 13-year-old daughter was       newsletter. She is married to a
                   At- Large
a Board Member At-Large. She       diagnosed with Dravet              wonderful man named Jerry




                                                                                                         Kimberly Skriba & family
and her husband, Scott,            syndrome eight years ago.          and they have six children—
reside in Flint, Michigan, with    Patti has a long history of        Jacob (20), Tyler (18), Amelia
children Gabe (12), Nicholas       service work, having been          (14) with Dravet syndrome,
(7) and Sophia (3). Michelle       volunteering with Epilepsy         Nicholas (11), Zachary (9) and
joined the IDEA League one         Newfoundland and Labrador          Abigail (5). Karen admits she
month before the 2006              since 1997. Patti keeps            probably spends a little too
conference held in Minnesota.      herself busy with numerous         much time at her computer
She says: “The first               projects. When she is not          working on IDEA League ‘stuff’
conference changed my life         doing her committee                and not quite enough time
completely. Scott and I            assignments, she can usually       cleaning her house, but she
thought we were the only ones      be found in her garden, at her     justifies this by saying she’d
in this world who had a child      sewing machine, or doing           rather put her efforts into
with this syndrome. The day        woodworking. She has spent         something that doesn’t get




                                                                                                                 Patti Thistle
we drove home is the day I felt    nearly every spare minute of       undone the moment she turns
a strong passion to be an          the past two years renovating      around!
advocate for our families and      her house. Patti is currently
children. The thought of any       serving as the Treasurer for            O'Driscoll,
                                                                      Lori O'Driscoll lucky mother of
family going through another       the IDEA League.                   Ciara (4) and Aidan (11
day with an unknown                                                   months) serves as the
diagnosis is heartbreaking.        John McMahan has served as         Secretary for the IDEA League.
Nicholas has been my               the Legal Advisor for the          She is currently completing
strength and teacher through       IDEA League since its              her Master’s Degree in
this whole experience and I        inception in 2006. He and his      Elementary Education and is

                                                                                                              John McMahan
truly thank him for choosing       wife, Jennifer, along with their   student teaching in a 4th
Scott and I as his parents.”       two daughters-- Amelia (13),       grade classroom. Prior to
                                   and Melorah (8)— reside            starting her family, Lori
Kimberly Skriba also serves a      in Lakeside Park, KY. John         worked for many years as a
                At-
Board Member At-Large and is       is licensed to practice law        Stage Manager (including with
Chair of the Family/Caregiver      in Kentucky and Tennessee,         the well-known Blue Man
Support and Advocacy               and most of his pro-               Group) and also as an event
committee. She has been            fessional expertise lies in the    planner. Lori's managerial and
“very happily married” to her      field of labor and employment      organizational talents, as well
husband, Radek, for 4 years.       law. His hobbies include           as her fundraising experience,
Her son, Ryan (9), was             amateur archeology, fiction        are a great asset to the IDEA
                                                                                                              Karen Glenn




diagnosed with Dravet              and poetry writing, dramatics,     League. For our benefit, she is
syndrome in 2007. They make        and carpentry. John feels that     currently organizing Ciara's
their home in Auburn, Georgia,     through serving on the board,      Butterfly Bash (see page 9).
(GO DAWGS!). Kim earned her        he is able to be an advocate       She first became inspired to
degree in accounting in 2006       not only for his daughter,         volunteer for the League when
and she, her husband and her       Melorah, but for other             she had the opportunity to
mother own their own tile          children diagnosed with            meet Board Members at the
business. “Before Ryan’s           Dravet syndrome. "It is my         2007 AES Conference in
diagnosis,” says Kim, “ I knew     hope to see greater                Philadelphia. Says Lori, "I am
                                                                                                            Lori & Ciara O’Driscoll




of no way to help him. Since       awareness of Dravet                honored to be serving as a
finding the IDEA League and        syndrome among health care         Board Member and will
my new extended family I have      professionals as well as an        forever be grateful for the
found a way to help Ryan and       increase in research within the    compassion and support
many like him. I look forward      medical community."                found within the IDEA
to the next two years of                                              League." Lori, her husband,
dedicating myself to educating     Karen Glenn has served on          Liam, and their children live in
others and spreading               the Board of Directors for the     Monroe, Connecticut.
awareness of Dravet                past three years, most
        Page 6                         Channeling In




                                       D i n n e r K i c k s o ff I D E A L e a g u e I n i t i a t i v e
                                       By Karen Glenn

                                       In conjunction with the recent    this network of centers is to     CCR-CCN center and has
                                       AES conference (see related       set a high standard of care for   already held its first Dravet
                                       article on page 1) the IDEA       Dravet syndrome patients in a     syndrome specific clinic. IDEA
                                       League held an event of its       multidisciplinary setting         League leadership will be
                                       own in Seattle in early           focused on the whole              meeting with doctors in Miami
                                       December. Approximately 50        child. With the League's          on February 2, 2009, to assist
                                       prominent epileptologists from    guidance, participating           in further development of the
                                       the US and abroad attended a      centers will also collaborate     program and grand rounds
                                       dinner symposium where they       with each other on research       presentations will shortly
                                       were introduced to the            into the causes, epidemiology     follow.
                                       League's initiative to create a   and treatment of Dravet
                                       Collaborative Clinical            syndrome as well as looking       The CCR-CCN program is one
                                       Research and Comprehensive        into trends in co-morbid          of many important initiatives
                                       Care Network (CCR-CCN).           conditions.                       targeted by the IDEA League
                                                                                                           for 2009 and we are
                                       Dr. Charlotte Dravet presented    Following the presentations,      encouraged by this excellent
Dr. Angela Black presents the IDEA     the keynote address focusing      Dr. Linda Laux joined Dr.         beginning. In the weeks to
League’s initiative of Collaborative   on her extensive work             Dravet and Dr. Black in a         come, we hope to move
      Clinical Research and            surrounding SMEI as well as       panel discussion with the         forward with several other
 Comprehensive Care Networks.          new data pertaining to the        audience. Much interest in the    centers.
                                       developmental outcome of          CCR-CCN was expressed by
                                       children with Dravet              the attendees, both at the
                                       syndrome. Following Dr.           dinner meeting and in
                                       Dravet, the IDEA League's         correspondence since. We are
                                       Professional Advisory Board       happy to announce that Miami
                                       Chair, Dr. Angela Black, spoke    Children's Hospital has taken
                                       more specifically about the       the lead in working with the
                                       CCR-CCN initiative. The goal of   League toward developing a




                                       At Theatre: Connections Forged, Money Raised
                                       By Angie Mimms

                                       Playwright John Guare’s Six       well attended, and in a nice      play was staged to raise
                                       Degrees of Separation is          setting,” said dad Scott          money for the IDEA League.
                                       about human connections. In       Crossland. Artists’ easels        Father Scott said it was good
                                       an intimate theater setting on    displayed information about       to see IDEA League members
                                       a cold December night, the        the IDEA League and seizure       at the play; about 10
                                       play itself forged human          types. One sported photos of      attended. And the others who
                                       connections as dozens who         son Scott along with the          attended, along with the
                                       attended learned about            article about him from the        acting company, were able to
                                       Dravet syndrome and an            League’s July newsletter.         learn about Dravet syndrome,
                                       8-year-old boy who died from      Copies of the IDEA League’s       he said.
        “It was a nice                 it.                               brochure for families were
                                                                         tucked into the playbills.        “It was a nice way to raise
                                       About 60 people attended an                                         some money and promote
way to raise some                      extra performance of the play
                                       by the Chicago-based Signal
                                                                         “It was nice of these people to
                                                                         dedicate a show for us,” Scott
                                                                                                           awareness.”

                                       Ensemble Theatre on Dec. 8        said. “It’s great that they
              money and                in memory of Scott
                                       Christopher Crossland, who
                                                                         wanted to do this without
                                                                         really knowing my son.”
                                       passed on June 6, 2008. The
                   promote             acting company donated $5
                                       from each ticket sold to the
                                                                         That is again where human
                                                                         connections come in. One of
                                       IDEA League.                      young Scott’s teachers has a
           awareness.”                 “It was a very nice evening,
                                                                         sister in the acting company,
                                                                         and through their efforts, the
        Pa 4 I
V o l u m e g e, 7 s s u e 1                                                                                                       Page 7




Living with Dravet Syndrome
By Griffin Holt

Editor’s note: This is the first in    down with them in the living         having a seizure. My
a new series of articles, which        room, and they explained to          teachers at school ask how
will appear periodically in            us what had gone on. They            Noah is and how long it has
Channeling In, sharing the             explained that Noah had just         been since Noah has had his
thoughts, feelings and                 had a seizure. They explained        last seizure. I would like to
experiences of those who have          what a seizure was. My               happily announce that it has
been personally impacted by            younger brother, Isaac, was          been almost six weeks since
Dravet syndrome or related             just 3 at the time and he            Noah has last had a seizure.
conditions.                            didn’t understand at all. But I
                                       was 5. I completely                  As a brother of a child that
Hello. My name is Griffin Holt. I      understood, and I knew life          has seizures, life is normal
am 11 years old. I am the              was going to be a little             most of the time. I eat           Isaac, Griffin and Noah Holt
oldest brother of a child that         different from now on.               breakfast, go to school, hang
has GEFS+. His name is Noah                                                 out with friends, play sports,
Holt. It is hard to have my little     Noah had a seizure about             wish for a cell phone, and
brother have a sickness such           every week, and every day he         live life. My friends ask me
as this, but I have been able to
struggle through this difficult
                                       didn’t have a seizure we were
                                       grateful. The doctors and
                                                                            questions about my brother,
                                                                            and I answer them as best I
                                                                                                              We always hope
obstacle in life. I will never         pediatricians from Children’s        can. When my brother has a
forget that day in September
2003, when Noah was 6
                                       Hospital have helped us a lot
                                       and one of the best things
                                                                            seizure, we always look
                                                                            ahead and start counting
                                                                                                               that when Noah
months old. We were                    they have done for us is to          how many seconds, minutes,
swimming in a friend’s pool,
when my mom noticed
                                       introduce us to the ketogenic
                                       diet. Noah has been on this
                                                                            hours, days, weeks, months,
                                                                            and maybe someday years
                                                                                                                has a seizure it
something was wrong with               diet for almost two years now        that Noah has not had a
Noah. He was jerking
uncontrollably in his baby seat.
                                       and it has helped us so much
                                       with Noah’s seizures. We
                                                                            seizure. We are grateful for
                                                                            every day Noah does not
                                                                                                                 will be his last
My mom and dad rushed to               always hope that when Noah           have a seizure.
the hospital with him and they         has a seizure it will be his last
left us in the care of our             seizure.                             Today, Noah is a blessing                          seizure.
friends until they came back.                                               and brings joy to our life too.
All afternoon I had wondered           In school, we were asked for         He brings love to this family
what was going on. When my             an art project to draw our           and bonds us together. I
mother and father came back            worst scene imaginable. I            hope that one day Noah will
to our friend’s house, we sat          drew my little brother Noah          not have seizures anymore.




M a d i ’s F r i e n d s Te e O f f O n c e A g a i n
By Cathy Holt

On the September 12, 2008,            Florida, and despite the fact        and sandals. The event was
the sun broke through the             that a hurricane was in the          sponsored by Dewers and
clouds and shone upon a               forecast, fun in the sun was         included many different types
large number of dedicated             had by all. The event was            of delicious scotch for
men and women. They were              hosted by the DeRibeaux              participants to sample. In
on the green to support a             Family and Mike Sena. Sarah          addition, local restaurants and
cause close to their hearts,          Rowsey (mother of David, who         bars had treats for the
the 2nd Annual Madi’s Friends         has Dravet sydnrome) gave of         players. At every other hole,
Golf Tournament. Madi’s               her time as well. In all, there      something delectable was
Friends is a non-profit               were over 25 volunteers who          waiting for the golfers. The
association whose main                helped make the event run            money raised for Dravet
purpose is to raise funds for         very smoothly.                       syndrome was significant, with
Dravet syndrome.                                                           $15,000 coming to the IDEA
                                      During the tournament, all the       League. Tremendous thanks
The tournament was held at            players were given travel golf       to Gus and Kimberly
the prestigious Doral Resort          bags, glasses, golf shirts and       DeRibeaux, Mike Sena and
and Country Club in Miami,            balls, beach chairs, umbrellas       everyone at Madi’s Friends!
        Page 8                     Channeling In




                                   In Loving Memory
                                   By Angie Mimms
                                   When you’re in the mood for       joy to Addy. And water? Well,      is just the routine of it all, the
                                   some nautical nonsense,           whenever Megan wasn’t              smiles, the laughs and the
                                   remember Addyson Leigh            looking, Addy would get into it,   way we did everything,”
                                   Demaray. Like her hero,           even in the middle of the          Megan says.
                                   Spongebob Squarepants, 4-         night.
                                   year-old Addy loved water and                                        Addy passed away in her
                                   loved to smile.                   Addy had an obsessive-             sleep on Nov. 14, 2008, while
                                                                     compulsive side, Megan             having a seizure. In her four
                                   Through all the shots, all the    reports. Drawers and doors         short years, Addy taught those
                                   medicine, Addy was always         had to be shut. Spongebob          around her some important
                                   smiling, always strong, mom       had to be on TV. “If               lessons: to live life one day at
                                   Megan says. “Never was            Spongebob wasn’t on the            a time, to accept that there’s
                                   anything too hard for her to      television, her world was not      a time for everything. Living
 Addyson Demaray(left) and her     handle.”                          right,” Megan says. Addy had       with Dravet syndrome— Addy
       sister, MacKinzy                                              Spongebob blankets,                was diagnosed in February—
                                   Born July 12, 2004, to            Spongebob pillows,                 opened their lives to so many
                                   parents Megan and Jon, Addy       Spongebob everything! At her       kind hearts, Megan says. “You
                                   fell in love with big sister      funeral, there was even a life-    have the ability to see that
                                   MacKinzy at first sight. The      sized Spongebob made of            there are some amazing
                                   two were inseparable. Addy        flowers.                           people out there.”
                                   loved to sing, too, and she
                                   loved music. Preschool was a      “I think the thing I miss most




                                   Father Advocates for Children with Epilepsy
                                   By Karen Glenn

                                   Scott Crossland, IDEA League      his son, who passed away this      approval for medications
                                   Board Member and father of        past June at the tender age of     which are already being
                                   Scott Christopher Crossland,      8 years from Sudden                successfully used overseas.
                                   recently took the opportunity     Unexplained Death in               Hopefully, telling Scott's story
                                   to travel to Washington, DC,      Epilepsy. The purpose of           impressed on the committee
Scott Crossland shares his son’s   as an advocate for children       Scott’s address to the panel       that urgent action needs to be
 scrapbook with Dr. Charlotte      across the United States living   was to impress upon them the       taken to help people with
 Dravet at the 2008 conference.    with intractable epilepsies.      urgent need for FDA approval       refractory epilepsies.”
                                                                     of overseas medications for
                                   On January 7, 2009, the US        the treatment of refractory        Thank you, Scott, on behalf of
                                   Food and Drug Administration      epilepsies.                        all parents of children in need
                                   (FDA) held an open public                                            of better treatments for their
                                   hearing as part of its Advisory   Said Scott of the experience:      seizures.
                                   Committee Meeting. At this        “It was very interesting to
                                   meeting, Scott was invited to     participate in the process the
                                   speak and share the story of      FDA takes to recommend




                                   Dravet Camp Weekend!
                                   October 2-4 has been designated for the 2009 Dravet Camp Weekend at Camp Courageous, Ken-
                                   tucky, USA. Camp Courageous is a camp for medically fragile children and their families. The camp
                                   has a wide variety of activities, including swimming, bowling, horseback riding and much more.
                                   There are medical facilities and amenities are wonderful as well —and it is all free of charge. An
                                   application with a physician’s signature is required. Hurry and book your space now, as space is
                                   limited and spots are going fast! To learn more, look for the posts on the IDEA League website or
                                   visit www.courageouskids.org.
Volume 4, Issue 1                                                                                                                Page 9




C i a r a ’s B u t t e r f l y B a s h
By Lori O’Driscoll and Karen Glenn

Get those wings pressed,          consist of cocktails, auctions,    Butterfly Bash an annual
because Ciara's Butterfly         dinner and dancing and is          benefit that will grow each
Bash, A Benefit for Children      sponsored by the O'Driscoll        year, becoming a major social
with Dravet Syndrome is           Family, whose 4-year-old           event and continued source of
coming up soon! The event is      daughter, Ciara, has Dravet        revenue for the IDEA League.
scheduled to take place on        syndrome. All proceeds from
Saturday, April 25, 2009, at      this event will go to the IDEA     The committee is still looking
the Greenwich Regency Hyatt       League's Research and              for items for the silent and live
in Greenwich, CT, USA. The        Medication Assistance funds.       auctions, such as jewelry,
Gala Honoree will be Dr. Paule                                       vacation rentals, etc. For more
Couture of The Pediatric          Lori and Liam O'Driscoll have      information, to volunteer to
Center in Stamford. She is        been working hard, along with      help on the committee, or to
being honored for her             a committee of friends, family     make a donation, please
commitment, compassion and        and community leaders to           contact Lori O'Driscoll at          Ciara O’Driscoll shines in her
dedication in treating a child    organize this gala                 butterflybash@idea-
with Dravet syndrome and for      event. Invitations have not yet    league.org.                            beautiful butterfly wings
her work with the ketogenic       gone out, and yet more than
diet.                             half of the tables have been
                                  sold! It is the O’Driscolls
The shimmering evening will       intent to make Ciara's




M a r k Yo u r C a l e n d a r s
By Krista Lazott and Karen Glenn

Two special dates are fast        attention on rare diseases on      www.rarediseases.org.
approaching, each with the        that day.
goal to raise awareness—Rare                                         Put on your Purple! Purple
Disease Day and Purple Day.       This will be the Second Annual     Day,
                                                                     Day slated for March 26, is
                                  Rare Disease Day. The first        the brainchild of Cassidy
The IDEA League has recently      was observed in Europe last        Megan of Nova Scotia,
joined forces with NORD— the      year and was organized by          Canada. Cassidy has epilepsy
National Organization for Rare    EURORDIS, the European Rare        and she wants the world to
Disorders—a US-based non-         Disease Organization, and the      know that “if you have
profit agency which               national alliances of rare         epilepsy, you are not alone.”
specializes in rare diseases.     disease patient organizations
NORD was established by           in each country. The ultimate      The Purple Day campaign
leaders of rare disease patient   goal is to have a global Rare      began in 2008, making this its
organizations (like the IDEA      Disease Day on the last day of     second year. Cassidy’s hope is
League) and is celebrating its    February each year. Members        that people around the world
25th anniversary this year.       of the IDEA League, as             will wear purple on March 26,
NORD helps almost 30 million      partners in this initiative, are   hold awareness parties or
Americans who have rare           invited to write to their state    fundraisers, and most of all
diseases with programs of         governors to request that Feb.     promote understanding
advocacy, education,              28, 2009, be designated Rare       regarding epilepsy.
research, and patient             Disease Day in their state.
services.                                                            Please consider hosting a
                                  The IDEA League is also            fundraiser of your own for the
As a part of NORD, the IDEA       authoring an article about         IDEA League on this day. It
League will participate in a      Dravet syndrome for the            could be something as simple
global Rare Disease Day on        NORD database.                     as selling cookies or mailing
February 28, 2009. As a Rare                                         out donation requests.
Disease Day Partner, we will      To learn more about NORD,
join hundreds of other patient    Rare Disease Day, and ways         To learn more about Cassidy
organizations, government         you can help to increase           and Purple Day, visit
agencies, medical societies       understanding of rare              www.purpleday.org.
and companies in focusing         conditions, visit online at
     Page 10




                                In Appreciation
                                We would like to thank the following benefactors who have given to the IDEA League over the past
                                several months. Your thoughtfulness and generosity in support of our cause are very much
                                appreciated!

                                Clare and Michael Carey, along with their extended family and friends
                                Madi’s Friends/Kimberly and Gus DeRibeaux                Douglas Grounds
                                David Nova and the team of the Marlin Maniac             The Alex G. Nason Foundation
                                Dr. Morton O. and Mrs. JoAnne Sperling                   Stacy and Zvi Rudawsky




                                C o n f e r e n c e D V D s N o w Av a i l a b l e !
                                A set of 12 DVDs containing recordings of presentations from our 2008 Bi-Annual Family and
                                Professional Conference is now available. Those who pre-purchased their DVDs should have
                                received them, or will be receiving them shortly. Families who attended the conference can attest
                                to the tremendous amount of exceptional information that was imparted. It is hoped that
                                awareness and understanding of Dravet syndrome will expand even further through the continued
                                viewing of these presentations.

                                Sessions on the DVDs cover a wide variety of topics related to Dravet syndrome, from appropriate
                                diagnosis and treatment, to genetics, to school supports and potty training tips. DVDs may still be
                                purchased for $100 by contacting Mary Anne Meskis at Maryanne.m@idea-league.org.

Some of the accommodations at   Many thanks to the conference planners and presenters and to everyone who worked tirelessly to
      CampCourageous            make these DVDs available. Special thanks to The Daisy Garland charity, based in the UK, for its
                                generous donation in support of this important project and to Sue Goodliffe and Paul Skluzacek,
                                without whom it could never have happened.




                                Dates to Remember
                                FEBRUARY 2009
                                       TBD        UK Family Gathering                                       TBD
                                       9-15       Epilepsy Awareness Week (1)                               New Zealand
                                       28         Rare Disease Day                                          USA, UK
                                MARCH 2009        Epilepsy Awareness Month, Canada
                                       26         Purple Day                                                Worldwide
                                       29         EF National Walk for Epilepsy, ‘Team Dravet’              Washington, DC USA
                                                  sponsored by Kim Skriba and Lisa Smith
                                APRIL 2009
                                        TBD       Canadian Family Gathering                                 TBD
                                        25        Ciara’s Butterfly Bash, A Benefit for Children with
        IDEA League                               Dravet Syndrome—Sponsored by the O’Driscoll family        Greenwich, CT, USA
                                MAY 2009
  P.O. Box 803338 #18880               8-10    Midwest Mom’s Retreat                                        Indianapolis, IN, USA
Chicago, IL, USA 60680-3338            13-19 Epilepsy Awareness Week                                        Australia
                                       18-24 National Epilepsy Week                                         United Kingdom
 Phone/fax: 312-821-9020
                                SEPTEMBER 2009
Toll-free phone: 888-402-IDEA          7-13    Epilepsy Awareness Week(2)                                   New Zealand
    www.idea-league.org         OCTOBER 2009
                                       2-4     Camp Courageous Dravet Weekend                               Kentucky, USA
 email: info@idea-league.org           3-6     Dravet Syndrome: 30 Years Later                              Verona, Italy

				
DOCUMENT INFO
Shared By:
Categories:
Stats:
views:7
posted:6/25/2011
language:Norwegian
pages:10