Channeling In by pzl37647

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									      Channeling In
      The        Ne wsl ett er          of     the      IDEA         Lea gue


IDEA League Announces Research Grant                                                                   Volume 5, Issue 1
By Karen Glenn
                                                                                                       January 2010
The IDEA League is pleased to    Research looking into the         lead to the improved under-
announce the initiation of our   epidemiology, etiology, natural   standing and treatment of
Research Award program. Our      course, treatment and cure of     Dravet syndrome is an
first research grant of          Dravet syndrome and related       important component of the          Inside this issue:
$30,000 will be awarded on       forms of epilepsy will be         IDEA League‘s mission.‖ said
April 1, 2010. This program      considered.                       Angela Black, MD, Chair of the      Encouraging Words      2
was launched at the American                                       IDEA League‘s Medical
Epilepsy Society conference in   Research awards will be paid      Advisory Board, who played an
Boston, Massachusetts, USA,      out over a two-year period,       integral part in writing the        Executive Minute       3
in early December 2009.          with second-year funding          protocols for this new
Applications for our 2010                                          initiative. ―I am excited for the
grant are currently being                                          initiation of this new program      Team Dravet            3
accepted and are due on                                            and the opportunity to have an
February 15. Several                                               even greater impact on this         AES Initiative         4
researchers are applying.                                          condition.―

The IDEA League is committed                                       The IDEA League plans to            In the Spotlight       4
to following only the best                                         expand this program to award
practices in awarding research                                     many more grants in the
                                                                                                       New Study              5
grants. Applications will be                                       coming years. Please see the
evaluated by the IDEA                                              related article below for how
League‘s Scientific Research                                       you can help.                       Website Launched       5
Review Committee, a
distinguished group of                                             For more information
research scientists, utilizing                                     regarding this program, or to       New Headquarters       6
the peer-review model of the     pending progress during the       request an application, please
National Institutes of Health.   first year. Watch for the         contact Marilyn Baker,              AES Meeting            6
Criteria for the judging will    announcement of this year‘s       Executive Director, at
include: relevance, quality of   winning grant in our April        Baker@IDEA-League.org.
the research lab, scientific     newsletter.                                                           In Loving Memory       7
merit, and potential for new
therapeutic approach.            ―Funding research that will                                           Dravet Quilt, part 2   8


                                                                                                       Mom’s Weekend          8


N o w Yo u C a n P e r s o n a l l y F u n d R e s e a r c h !                                         Christmas In July      9
By Angie Mimms
Honor your child. Fund           your fund with the IDEA           researchers from around the         Dates to Remember      9
research. Provide hope.          League. Next, start a mail        world, will evaluate and score
                                 campaign, social networking       those applications, selecting
All this is possible through a   blitz and/or plan a fundraising   only the best to receive the
new IDEA League program          event. The IDEA League will       funds.
called Funds of Hope, which      collect, manage and reserve
allows individuals, families     the donations you receive in      Kimberly Skriba, a League
and corporations to raise        your fund‘s name. There is no     Board Member, has
research dollars to be named     time limit in which you must      established a fund named for
for their child, family, loved   raise the money. Once any         her son, Ryan Smith, age 11.
one or business. One hundred     fund reaches $30,000, it will     ―I wanted to do something
percent of funds you raise       be eligible to be awarded. The    positive to honor Ryan for all
through this program go          IDEA League will advertise        the struggles he has been
directly to research—not one     annually for research award       through,‖ Kimberly said.
penny is used for                applications and our Scientific   Haley Smith, 9, also has a
administrative expenses.         Research Review Committee,        fund named for her. ―I‘m so
                                 comprised of leading              excited about it,‖ said mom
The first step is to register    scientists and medical                    (Continued on page 7)       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

                          “The most important thing a         average among our families.         to keep in mind the following
                          father can do for his children      No one is surprised by this.        ―Twelve ‗T‘s for Healthy
                          is to love their mother.”           The daily pressures of family       Relationships‖: Truth –
                          --Theodore M. Hesburgh,             life are compounded by the          fidelity of heart, mind and
                          Former President, University of     added physical, social,             body; Trust -- confidence and
                          Notre Dame                          emotional, time and financial       faith in one another; Talk --
                                                              pressures of caring for a loved     communication that is open,
                          As Valentine‘s Day                  one with special needs. Some        respectful and frequent;
                          approaches, the shops have          marriages that might have           Teamwork — support of one
                          been filling up with hearts,        worked under more typical           another in daily tasks and in
                          candy and flowers in red and        circumstances will not be able      interactions with others;
                          pink, chocolates, and boxes of      to survive this added               Thoughtfulness --
                          valentine cards with amusing        pressure. In those                  consideration of one
                          little sayings from Scooby Doo      circumstances, I imagine Dr.        another‘s feelings and
                          and Winnie the Pooh. Parents        Hesburgh might counsel us to        needs; Tolerance -- empathy
                          will soon receive notes from        find a different way to love our    and understanding of one
   When raising our       their children‘s teachers with
                          instructions for classroom
                                                              children‘s other parent – at
                                                              least enough to meet the
                                                                                                  another‘s human failings;
                                                                                                  Tenacity – determination to
                          valentines and lists of             children‘s needs and be good        succeed; Thanks –
fragile children, it is   classmates that should              parents together.                   expressing appreciation of
                          receive them, as well as                                                each other‘s gifts and efforts.
                          requests for donations and          When raising our medically
   easy to forget the     volunteers for the class            fragile children, it is easy to     And for February 14, I will
                          parties. An event once focused      forget the importance of            challenge myself to plan
       importance of      on courtship and romantic love
                          has become a widespread
                                                              making our marriage a priority.
                                                              Our children‘s needs are so
                                                                                                  something special involving
                                                                                                  one or more of the following
                          celebration of love of all kinds,   intense that we push our own        (and to make this plan
          making our      and we may feel pressure to         needs and those of our              before I buy valentines for
                          remember our family members         spouse completely aside. We         my children to exchange at
                          and friends on this day, as well    may become more like co-            school): Tryst – setting aside
marriage a priority.      as to help our children do the      workers than lovers. We tell        some special time to share
                          same. I don‘t really object to      ourselves that being ‗grown         with each other; Touch –
                          this expansion of the holiday.      up‘ and responsible means           cuddling, a gentle caress;
                          When celebrating love, I feel       that we must delay our own          Tenderness – loving words
                          inclusiveness is a good thing. I    gratification. And that is true –   and actions; Token –
                          just want to make sure that my      to a degree. The problem is         handmade or purchased on
                          romance doesn‘t get lost in         that failing to care for            the fly, it is the thought that
                          the shuffle.                        ourselves and our partners          counts.
                                                              can result in failing our
                          I can‘t imagine that Dr.            children. They need us to keep      I wish you all a healthy and
                          Hesburgh would object to my         ourselves and our marriage          happy Valentine‘s Day!
                          extrapolation that the most         healthy and whole in order to
                          important thing a mother can        best meet their needs. This         Further reading: Married with
                          do for her children is to love      assertion is supported not only     Special Needs Children by
                          their father. For a healthy         by common sense, but by             Laura Marshak and Fran
                          relationship it has to go both      research as well.                   Prezant and Special Needs
                          ways. Most parents of children                                          Child: Maintaining Your
                          with special needs are              So as Valentine‘s Day               Relationship by Antonia
                          conscious of reports that           approaches, I will try to make      Chitty and Victoria Dawson.
                          divorce rates are higher than       my romance a priority. I will try




                          Special Promotion
                          Emfit Corp. is currently offering their Movement Monitor at a reduced price of $450. The monitor,
                          which can detect many types of nocturnal seizures, regularly sells for $600. This promotion lasts
                          only through January 31, 2010. Mention the IDEA League when you purchase and 10% will be
                          donated to our cause. Call toll-free at (877) 32EMFIT or visit www.emfit.com.
Volume 5, Issue 1                                                                                                                    Page 3




Executive Minute
B y M a r i l yn B a k e r , E x e c u t i v e D i r e c t o r

It is truly an honor to be                   already actively involved in the   more working relationships
working with each of you and                 work that this organization is     with international health care
alongside such an amazingly                  doing, please join with us!        professionals, scientists,
dedicated Board to further this                                                 hospitals, families, and others
important cause. I am                        Our vision for the coming year     who can help us to improve
impressed with the amount                    is to accomplish our mission       treatment and find a cure.
that this organization has                   by:
accomplished over the past                                                      This vision will take hard work,
several years and at the                     1) Ensuring professional           perseverance, and financial
number of parents who,                       business practices. We are         support. With your help, we
despite the exhausting                       conducting our operations          can do it! Please contact me
challenges of caring for their               according to the highest           to discuss how you can
own child with Dravet                        standards of ethical and legal     contribute to this amazing         This coming year will
syndrome, are reaching out                   practices, including an annual     league of parents and
around the world to help other               financial audit and peer-          professionals dedicated to         be a great time of
families who are similarly                   reviewed research awards.          helping families with Dravet
struggling. The international                                                   syndrome and related
partnership which you have                   2) Increasing our research         conditions.
                                                                                                                   growth, excitement and
created has become the major                 fund. We are awarding one
force that is improving the                  $30,000 study in 2010 and                                             hope as we make new
outcome and working to find a                have commitments to raise
cure for this challenging                    $90,000 for 2011.                                                     strides in furthering the
condition.
                                             3) Creating valuable services.
This coming year will be a                   We will deliver more support,
                                                                                                                   treatment of Dravet
great time of growth,                        additional education, and
excitement and hope as we                    further help to families around                                       syndrome and related
make new strides in furthering               the world.
the treatment of Dravet                                                                                            forms of epilepsy.
syndrome and related formsof                 4) Expanding our
epilepsy. If you are not                     partnerships. We will develop




J o i n O u r Te a m f o r t h e N a t i o n a l Wa l k
By Karen Glenn

Team Dravet is gearing up to                 Dravet syndrome and related        have access to a meeting
storm Washington once again!                 conditions. They have set up a     room so families can
For the third year in a row,                 Facebook page for Team             comfortably gather and visit
IDEA League families will                    Dravet where you can find          with one another, regardless
gather in Washington, DC,                    information about the walk         of what the weather brings. A
USA, for the National Walk for               and make a donation. So far,       lunch is planned immediately
Epilepsy. This year‘s event will             at least 10 families are           following the walk. If you are
take place on Saturday, March                planning to attend the walk.       interested in attending,
27. Thanks to the efforts of                 The National Walk for Epilepsy     please contact Lisa soon by
volunteers Lisa Smith and                    is put on annually by the          emailing her at
Kimberly Skriba, along with all              Epilepsy Foundation.               haleyandtwins@aol.com.
the families who attended,
last year Team Dravet was the                Lisa has arranged for hotel        If you are unable to attend but    “This year, we are
second largest group at the                  rooms for families at L‘Enfant     wish to show your support,
event. ―This year, we are                    Plaza Hotel at a special price     please consider making a
shooting for first!‖ stated Kim.             of $109 per night, but space       donation to Team Dravet to         shooting for first!”
                                             is limited. Service dogs will be   support their efforts.
The Team is working to raise
awareness and funds for
                                             allowed at no additional
                                             charge. The group will also
                                                                                                                   stated Kim.
      Page 4                      Channeling In



                                  IDEA League Contributes to AES Initiative
                                  By Joan Skluzacek

                                  The American Epilepsy Society            meeting held during the AES         collaborate on a project that
  The IDEA League is              conference brought with it               conference. Ten leading             will raise awareness of the
                                  some interesting new                     epilepsy organizations and          seriousness of epilepsy within
   pleased to have this           prospects for the IDEA
                                  League. Among these is the
                                                                           agencies were represented in
                                                                           this meeting. The agenda was
                                                                                                               the general public.

                                  opportunity to participate in            to assess existing statistics on    On a separate note, plans
           opportunity to         Vision 2020, an initiative               epilepsy and determine what         were initiated at AES for a
                                  being led by the AES in an               additional data is needed to        new collaborative research
        collaborate on a          effort to bring together                 develop a common message            study in which IDEA League
                                  epilepsy organizations and               about epilepsy. Each group is       families can participate. For
 project that will raise          develop a common strategy                asked to contribute its             further information about this
                                  for educating the public that            thoughts on what should be          exciting new project, please
                                  will enhance each                        reflected in the message. The       see the article on page 5 of
        awareness of the          organization's mission and               AES will lead an effort to bring    this issue.
                                  increase awareness and                   this message to the public, a
seriousness of epilepsy           funding for epilepsy research.           plan that is expected to
                                                                           include televised public
                                  IDEA League Director Kimberly            service announcements.
     within the general           Skriba and Founder Joan
                                  Skluzacek represented the                The IDEA League is pleased to
                      public.     IDEA League at a Vision 2020             have this opportunity to




                                  In the Spotlight
                                  B y P a u l a L yl e s a n d T i n a M c N u l t y

                                  Hello! My name is Kyle                   Topomax, which made it              without one. My entire family
                                  McNulty; I was born on July              difficult for me to speak.          must watch me constantly
                                  16, 2001. My older sister is             My EEG results were normal in       because I can have a seizure
                                  Mikayla and my two older                 2006, but my doctors decided        almost anytime, but they
                                  brothers are Ryan and Sean.              to adjust my medications, as I      usually happen at night.
                                                                           would be entering school in         I go to a special school
                                  When I was three months old,             the fall. The more the doctors      because of the difficulties I
                                  my arm started shaking on its            tried to find the correct           have remembering things—it
The McNulty family at Give Kids   own for some reason, so my               combination, the worse I got. I     causes me to have trouble
  the World Village for Kyle’s    Mum and Dad took me to the               ended up back in the hospital       getting my words out, and it
       Make-A-Wish trip.          hospital. By the time we got             in November of 2006 with            clouds my thinking. I am 8
                                  there, it had stopped. When I            what the doctors determined         years old now and I like Dora,
                                  was six months old, I had my             was status epilepticus. I had       Max & Ruby and the
                                  first grand mal seizure which            to stay in the hospital for three   Backyardigans. I enjoy playing
I am glad my parents              lasted 40 minutes. This time I           weeks this time. I even tried       games on the computer, but
                                  went to the hospital by                  the ketogenic diet; but I didn‘t    it‘s hard for me to concentrate
          have the IDEA           ambulance and stayed two
                                  days. It happened again; the
                                                                           like it, and it didn‘t work. The
                                                                           seizures continued, and I was
                                                                                                               there, too. When I see old
                                                                                                               videos of myself and the way I
                                  doctors said my seizures were            having trouble remembering          used to speak, I wish I could
 League to be able to             coming from fevers.                      things.                             be that way again.

          talk with other         In 2002, I had 6 seizures. In
                                  2003, I had 10 seizures; some
                                                                           After a battery of tests done by
                                                                           a new doctor, I found out that I
                                                                                                               I am glad my parents have the
                                                                                                               IDEA League to be able to talk
                                  of these were without fevers. I          have Dravet syndrome. It‘s          with other parents who know
    parents who know              was taking medication, but it            nice to have a name for what        what they are going through.
                                  was not stopping the seizures.           is happening to me. We              The IDEA League has helped
                                  In 2004, I had more without              learned that the Lamictal and       my parents know they are not
  what they are going             fevers, but the doctors still            Trileptal I was on were causing     alone, and it‘s such a great
                                  weren‘t worried. Even though I           more seizures for me.               support network!
                    through.      had only had 2 seizures in               I still have seizures, but
                                  2005, my doctors put me on               sometimes I can go 2-3 days
Volume 5, Issue 1                                                                                                            Page 5




New Study Seeks Further Causes of
Dravet Syndrome
By Karen Glenn
Mutations in the sodium           future disease-specific            League feels strongly that
channel gene SCN1A are            therapies and possibly a cure.     together we carry the
understood to contribute to                                          information needed to find the
between 50 percent and 80         IDEA League families are           answers to this challenging
percent of cases of Dravet        being recruited to participate     condition, and we encourage
syndrome. This leaves another     in this important study and        our members to seriously
20 percent to 50 percent of       assist in broadening the           consider taking part in
patients and families—and         understanding of the causes        appropriate research
their physicians—baffled and      of Dravet syndrome.                whenever it is feasible.
without an explanation for        Qualifications include having
their severe seizures. A new      at least two family members        The goal of Gleeson
study hopes to uncover the        with a history of epilepsy, one    Neurogenetics Laboratory‘s
answers these families and        of them having Dravet              research at the University of
doctors desperately need and      syndrome and a negative            California, San Diego, and
further the understanding of      SCN1A test. The epilepsy           Howard Hughes Medical
this devastating condition.       cannot be due to trauma,           Institute, is to identify new
                                  tumors, infection of the           genes that cause pediatric        IDEA League families are
The study, being conducted by     central nervous system,            brain disorders and to further
Gleeson Neurogenetics             stroke, pregnancy or birth         understand how genetic            being recruited to
Laboratory, is one of the first   complications, or other            mutations affect brain
to employ a new technology        environmental factors. If your     development.                      participate in this
that allows scientists to         family meets these criteria
sequence every coding gene        and you are willing to             The IDEA League extends           important study and assist
in the human genome at one        participate, please contact        thanks to Tracy Dixon-Salazar,
time. Researchers at the lab      Karen Glenn at Karen.G@IDEA        PhD, and Dr. Joseph Gleeson       in broadening the
will apply this knowledge         -League.org for more               for their willingness to delve
toward discovering and            information.                       further into the causes of        understanding of the
identifying additional genes                                         Dravet syndrome and help us
that cause Dravet syndrome        While participation in any         to find the critical answers we   causes of Dravet syndrome.
and, in turn, these discoveries   study should always be at the      need.
will lay the foundation for       families‘ discretion, the IDEA




N e w We b s i t e L a u n c h e d !
By Karen Glenn
On December 1, 2009, the          than any of us first               can be labor-intensive and will
IDEA League launched a new        envisioned. It took a little       take time to expand.
and more comprehensive            longer than planned, but we
website. The new site has an      think it was worth it!‖            The skills of Paul Skluzacek,
updated look and boasts a                                            who has served as the IDEA
whopping 31 pages of helpful      The improved site has many         League‘s webmaster since our
information for families and      new features, which we hope        inception, have been
professionals looking to learn    visitors will find helpful. One    invaluable for troubleshooting
about Dravet syndrome and         of the most exciting features      challenges and ensuring that
related forms of epilepsy.        is the ability to include          the site runs properly and that
                                  information in multiple            the transition was seamless.
―We are so excited to finally     languages. The site already
have the new site up and          has information available in       Many thanks go out to Kim
running.‖ said Kimberly           Spanish and will soon have         Skriba, Paul Skluzacek, and
                                                                                                       The improved site has
Skriba, who headed the team       pages in French as well.           Karen Glenn for the many
working on the project. ―This     Ensuring the accuracy of           hours of work they put into
                                                                                                       many new features, which
endeavor sort of took on a life   medical data shared on the         this endeavor.
of its own and grew into          site is critical, so translation                                     we hope visitors will
something bigger and better
                                                                                                       find helpful.
       Page 6                      Channeling In



                                   IDEA League Establishes Headquarters
                                   By Karen Glenn

                                   For the first time in our four-   The mailing address for the         such as this that we are able
                                   year history, the IDEA League     IDEA League will remain at:         to direct so much of our
                                   has a brick-and-mortar office!    P.O. Box 797, Deale,                donations to research, support
                                                                     Maryland, USA 20751.                and education.
                                   The office space, located in
                                   Deale, Maryland, USA, has         The phone number for the
                                   generously been leased to the     office is also unchanged at
                                   IDEA League free of charge for    443.607.8267.
                                   the coming year by South
                                   County Properties. The office     Many thanks to South County
Jay McConnell, Vice President of
                                   furniture was kindly donated      Properties for donating this
 South County Properties, hands    by our own Marilyn Baker,         space for our cause. It is only
    over the keys to the new       Executive Director.               from generous contributions
  IDEA League headquarters to
        Marilyn Baker.




                                   American Epilepsy Society Meeting
                                   By Joan Skluzacek

                                   The 63rd annual conference of     spring. (See related article on     dysautonomia are common in
                                   the American Epilepsy Society     p. 1)                               children with Dravet
                                   (AES), the US chapter of the                                          syndrome. They are more than
                                   International League Against      Many IDEA League                    twice as likely as the children
                                   Epilepsy (ILAE), took place       professional friends and            in the control group to have
                                   December 4-8, 2009, in            Medical Advisory Board              nine of the ten signs of
                                   Boston, Massachusetts, USA.       members were in attendance          dysautonomia evaluated in
                                   The IDEA League was pleased       and a number of them,               this study. She highlighted the
                                   to participate for the fourth     including Drs. Alica Goldman,       need for further studies of the
                                   time in as many years.            Katherine Nickels, Ingrid           clinical significance and
                                   Representatives of the IDEA       Scheffer, Peter De Jonge,           additional approaches to
                                   League in attendance were         Sameer Zuberi, Marcio Sotero,       management of autonomic
 IDEA League attendees of the      Marilyn Baker, Executive          Helen Cross, and Carol              dysfunction.
  63rd annual AES conference       Director; Angela Black,           Camfield, were presenting
 included (left to right): Karen   Medical Advisory Board Chair;     lectures or research abstracts.     This year‘s conference
                                   Joan Skluzacek, Founder; and                                          highlighted research
Glenn, Director; Angela Black,
                                   Karen Glenn and Kimberly          Of particular interest to our       addressing some very difficult
  MAB Chair; Marilyn Baker,
                                   Skriba, Directors.                members, 54 of whom                 challenges associated with
Executive Director; Kim Skriba,                                      participated through the IDEA       epilepsy, including mortality
 Director; and Joan Skluzacek,     At our booth, the IDEA League     League Family Forum, may be         and SUDEP. Marilyn Baker
                                   exhibited the abstract posters    the abstract presented by lead      observed, ‖While researchers
                                   presented by our organization     author Dr. Beverly Wical: Signs     have found effective
 Of particular interest to         at the international workshop     of Dysautonomia in Children         treatments for many of the
                                   in Verona last October            with Dravet Syndrome.               more common forms of
  our members… may be              (available for viewing at         Dysautonomia is a term that         epilepsy, it is encouraging to
                                   http://www.idea-league.org/       refers to dysfunction within        see investigations focusing on
the abstract presented by          research-pub). Epilepsy           the autonomic nervous               the rarer pediatric disorders,
                                   specialists visiting our booth    system. The autonomic               which are devastating
 lead author Dr. Beverly           showed significant interest in    nervous system controls             thousands of families each
                                   the data on both SUDEP/           ‗unconscious‘ bodily functions      year. Research is needed for
            Wical: Signs of        mortality and comorbidities. In   such as heart rate, body            all forms of epilepsy because
                                   addition to our educational       temperature, digestion and          increasing our knowledge
                                   brochures and awareness           breathing. Dr. Wical is a           base leads to the discovery of
          Dysautonomia in          materials, the IDEA League        pediatric neurologist               effective treatments and cures
                                   also distributed information      practicing at Gillette Children‘s   for all.‖
     Children with Dravet          regarding our CCR-CCN and         Specialty Healthcare in St.
                                   applications for the research     Paul, Minnesota, USA. Her
                  Syndrome.        grant we will award this          study revealed that signs of
Volume 5, Issue 1                                                                                                                     Page 7




In Loving Memory
By Sloane Stricker and Cathy Holt
Reed Thomas Stricker was           Myoclonic Epilepsy of Infancy       me and squeezed. I‘ll cherish
born April 21, 2008. He was        (SMEI) or ―Dravet syndrome‖.        that and the memory of Reed
born healthy at 8 lbs, and for     Although Reed still carried on      for the rest of my life. We will
his first six months was a         like a normal toddler, played       miss him dearly.
perfectly normal and               happily, grew quickly, and met
developing baby boy.               all pediatric milestones, he        —Sloane Stricker, father
                                   had a total of 20 major
At six months old, Reed had a      seizures, 16 ambulance rides,       It is not often that children are
generalized seizure following      and thousands of brief              born with Dravet syndrome.
a routine vaccination. The         absence seizures. But for 20        When those babies come to a
initial ER diagnosis was a         months he had many                  family, they change our lives.
simple ―febrile‖ seizure that,     adventures in camping,              They make us better people
while not uncommon, was the        swimming, running, climbing,        than we were before. The
result of an elevated              sledding, cuddling, traveling,      amazing thing about each of
temperature. In the                helping, and playing—all while      these children and their                       Reed Stricker
subsequent five months Reed        not the slightest bit aware of      families is the positive impact
had many more seizures,            his condition or seizures when      they have on everyone around        April 21, 2008 – January 1, 2010
some up to 30 minutes and          they occurred.                      them. This beautiful little boy
longer. All common tests such                                          and his family's example will       “As I carried him into his
as spinal tap, CAT scan, and       Sadly, on New Year's Day,           continue to touch all who
blood tests were negative. We      Reed died quietly in a normal       knew him.                           final afternoon nap, he
were abruptly introduced to        afternoon nap after playing in
epilepsy and our lives were        the park with his brother,          Thank you, Tami & Sloane,           deliberately turned to me and
changed.                           father, and grandpa. The            from all of us in the IDEA
                                   official cause of death was         League, for sharing Reed with       put both arms around me and
Reed went on several anti-         Sudden Unexpected Death in          everyone around him. Thank
epileptic drugs (AEDs) but         Epilepsy (SUDEP).                   you for helping our children by     squeezed. I’ll cherish that and
continued to have complex                                              positively impacting,
seizures and status                We could not have asked for a       influencing and educating           the memory of Reed for the
epilepticus. In late March of      more loving and expressive          your community about the
                                                                                                           rest of my life.” —Sloane
2009, he was hospitalized at       child, who just recently            reality, the struggles and the
Denver Children‘s Hospital         learned to hug on his own free      blessings of knowing a child        Stricker
after a long seizure for several   will and initiative. As I carried   with Dravet syndrome.
days of EEGs, monitoring, and      him into his final afternoon
tests. Eventually, he was          nap, he deliberately turned to      —Cathy Holt
diagnosed with Severe              me and put both arms around




Funding Hope,                       continued
Lisa, a League member. ―We         donations from fundraising          a child, a wedding
love that we can tell              events to benefit Haley. In         anniversary—any important
benefactors that 100 percent       fact, the Smith family has          person, company or special
of the funds will go directly to   already had an article written      occasion.
research, and having Haley‘s       about their fundraising in their
name on the fund helps them        local newspaper.                    Anyone interested in the
feel connected and know they                                           Funds of Hope program can           “We love that we can tell
are truly having an impact.‖       Funding for desperately             go to www.IDEA-League.org
                                   needed research is something        and click on ―research‖ and         benefactors that 100
Kimberly plans to form a           the IDEA League has wanted          then ―Funds of Hope‖ for more
committee of friends and           to do for a long time,              information. You also may
family to work on fundraising      Executive Director Marilyn          contact Marilyn at                  percent of the funds will
activities, such as softball and   Baker said. ―It‘s part of our       Baker@IDEA-League.org or
bowling tournaments and a          mission,‖ she added, ―and           443.607.8267.                       directly to research…”
dance or concert in a park.        we‘re growing so we‘re now
Lisa said a local church and       able to go to our next step.‖                                           —Lisa Smith
school have pledged                Funds can be named to honor
       Page 8                        Channeling In




                                     S e c o n d D r a v e t Q u i l t U n d e r Wa y
                                     By Brend a Ferrell and Karen Glenn
                                     The first quilt created to honor   Member Kim Skriba. She will       been set up by Sharon Wills at
                                     our beautiful children with        send you an 8.5-inch white        http://quilt.shazzas.info.
                                     Dravet syndrome—the Dravet         quilt square and give you any     There you can learn more
                                     Quilt of Celebration—is nearly     needed guidelines. You will       about both quilts and also
                                     complete! Many families            design and decorate the block     make your contribution via
                                     contributed blocks for this        as you see fit and return it to   Paypal.
                                     quilt, which was lovingly          Kim. Families that would like
                                     assembled by Brenda Ferrell.       to create a photo quilt square    Kim has already received five
                                                                        of their child, but do not have   squares for our Dravet Quilt of
                                     If you missed the opportunity      the means to do this can get      hope. Don‘t be left out this
                                     to participate in the Dravet       help from the quilt team.         time. Design and send in your
                                     Quilt of Celebration, we have                                        quilt square, your story, and
                                     good news for you! Brenda is       The quilt team requests that      your contribution today!
                                     now starting a second quilt—       you send a letter describing      Contact Kimberly Skriba at
                                     the Dravet Quilt of Hope—and       how your quilt square             Kim.S@IDEA-League.org.
The nearly complete Dravet Quilt     any family of a child with         represents hope for you. A
of Celebration. Families are now     Dravet syndrome is invited to      $10 contribution is also          Many thanks to Kim, Shazza,
 invited to contribute blocks to a   contribute.                        requested to help offset the      Brenda, and the other
new project—the Dravet Quilt of                                         expenses involved with the        volunteers who are working to
              Hope.                  To be a part of this wonderful     construction of the quilt.        make these beautiful pieces
                                     project, all you need to do is                                       of art a reality!
                                     contact IDEA League Board          A Dravet Quilt web site has




                                     A Ti g e r M o m Tr a d i t i o n C o n t i n u e s
                                     By Karen Glenn
                                     Mothers of children with           book with confidence.             Member, Dina Nelson. Says
                                     Dravet syndrome are invited                                          Dina, ―Most moms never get a
                                     to gather for the 5th annual       The Omni hotel is located in      break away or think they could
                                     Dravet Mom‘s Weekend.              thriving and very safe            never leave their Dravet child.
                                                                        downtown Indianapolis, close      I thought the same thing for
                                     Traditionally held over            to a variety of restaurants,      two years before I attended.
                                     Mother‘s Day weekend, this         bars, museums, specialty food     You can leave, and you will be
                                     year‘s gathering will take         stores, beauty shops and          a better mom and wife for
                                     place on May 6-10 in               much more. The weekend will       having done so.‖ For more
                                     Indianapolis, Indiana, USA, at     include a guest speaker and a     information, to hook up with a
                                     the 5-star Omni Hotel. ‗Tiger      Mother‘s Day brunch with the      roommate, or to see if you
                                     Moms‘ will be able to receive      best moms around!                 may qualify to fly on Angel
                                     a special room rate of just                                          Flights, you may contact Dina
                                     $99/night and reservations         This event is being graciously    at HopeForSydney@live.com.
                                     can be cancelled at no             organized by IDEA League
                                     charge, if needed, so you can      volunteer and former Board




                                     2010 Family Conference
                                     The IDEA League will be holding our 3rd Bi-Annual Family Conference on August 26-29 at the
                                     Hyatt Regency in Greenwich, Connecticut, USA. This event will bring together leading experts from
  Mark your calendars and            around the world to share information relative to recent advances in laboratory and therapeutic
                                     approaches for Dravet syndrome and related epilepsies. Families will have the opportunity to
 plan to attend—you won’t            interact with others, learn more about progress being made in research, receive education on
                                     lifestyle and coping issues, and take advantage of a personal consultation with doctors.
               want to miss it!      Registration will be available on our website, www.IDEA-League.org, beginning February 1.
Volume 5, Issue 1                                                                                                                    Page 9




Tw a s t h e N i g h t B e f o r e C h r i s t m a s ( I n J u l y ! )
B y P a u l a L yl e s a n d K a r e n G l e n n

Are you ready for the magic?            the kiddos, and scrumptious       Kids, bring your Christmas
                                        holiday hors d‘oeuvres and        pajamas to change into later
It may seem like an ordinary            beverages to get the evening      in the evening, because you
summer evening, but for                 started.                          just never know who may stop
those who step through the                                                by! Remember that this is all
doors of the Fountain Bleu in           Glide next door, and you will     happening in northeast Ohio,
Avon, Ohio, on July 23. 2010,           experience a winter               and it is quite possible that it
it WILL BE Christmas Eve. Be            wonderland! Indulge yourself      may even snow!
prepared to blink your eyes a           in the decadent food,
time or two! At this marvelous          seasonal drinks, and sounds       This magical event is brought
benefit for the IDEA League,            of Christmas like you've never    to you courtesy of the Lyles
you will feel as if you have            heard before! Sit back and        family. The proceeds of Twas
stepped right into all the              listen to Praise-Apella, a        the Night Before Christmas
festivities and grand
decorations that are such a
                                        totally awesome vocal group
                                        that will have you on your feet
                                                                          will help the IDEA League
                                                                          further our mission of
                                                                                                             Soon your heart
very special part of                    in amazement, as they share       education, support and
Christmas! There will be                the true meaning of               research. For more                 will believe that it
phenomenal and festive                  Christmas. Soon your heart        information, please contact
auction items sure to delight           will believe that it IS           Paula Lyles at
every bidder, a Christmas play          Christmas Eve!                    pal601@aol.com.                    IS Christmas Eve!
land and craft area just for




Dates to Remember
MARCH                 EPILEPSY AWARENESS MONTH-CANADA
           26         Purple Day                                                  Worldwide
           27         Team Dravet at the National Walk for Epilepsy               Washington, DC, USA
May
           6-9        5th Annual Dravet Mom‘s Weekend                             Indianapolis, Ind, USA
JUNE
           18-21      UK Family Holiday                                           Sherwood Forest ,
                                                                                  Centerparc, UK
July
           23         Twas the Night Before Christmas:
                      A Fundraiser to Benefit the IDEA League                     Avon, Ohio, USA


AUGUST
           26-29      IDEA League Bi-Annual Conference                            Greenwich, Conn, USA
                                                                                                                      IDEA League
                                                                                                                      P.O. Box 797
NOVEMBER
      6               IDEA League-UK Conference                                   East Sussex, UK                Deale, Maryland 20751
                                                                                                                     443.607.8267
                                                                                                                  www.idea-league.org
                                                                                                              email: Baker@IDEA-League.org
                                                                                                                 or info@idea-league.org

								
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