NF NL Fall 04

Document Sample
NF NL Fall 04 Powered By Docstoc
					FALL         2004                                                                                                                  SPOTLIGHT
                                                                                                                                                   A “Springy” Philosophy of NF2
                                                                                                                                                                                              By Jane Cahn




                                                                                                                                                                   I
                                                                                                                                                                n June of this year I
                                                                                                                                                                interviewed 13-
                                                                                                                                                                year-old Shelaine
                                                                                                                                                            Hellickson of Eliza-
                                                                                                                                                            beth, Colorado. It was
                                                                                                                                                                                                           If you happened to see the plays, "I Hate the
                                                                                                                                                                                                           Mall" or "This Job Womps" at her school,
                                                                                                                                                                                                           Shelaine acted as the narrator in one and an
                                                                                                                                                                                                           embarrassed mom in the other.
                                                                                                                                                                                                                When she grows up, she wants to use her
 Tel: (303) 460-8313
 Fax: (303) 460-1421                                                                                                                                        our second meeting                             academic ability and energy to be a pedia-
                                                                                                                                                            and I remembered that                          trician, or a researcher. She is especially inter-
                                                                                                                                                            her hopes, dreams, and                         ested in discovering cures and better treatments
neuro fibroma tosis
               THE NATIONAL NEUROFIBROMATOSIS FOUNDATION, INC.




                                                                                                                                                            aspirations for life are                       for cancer. She believes her family’s experi-
                                                                                                                                                            imbued with joy.                               ences have given her a special empathy that she
                                                                                                                                        Her mom, Terri (receptionist in a physi-                           could bring to her work.
                                                                                                                                   cian’s office) and her dad, Layne (computer                                   I first met Shelaine in late 2001when she
                                                                                                                                   consultant), are both natives of Montana.They                           came to at The Children’s Hospital for gall
                                                                                                                                   are raising Shelaine (an eighth grader at                               bladder surgery. She experienced an earlier
                                                                                                                                   Elizabeth Middle School) and her brother                                surgery in second grade for removal of
                                                                                                                                   Kolten (local football star) along with an                              schwannomas from her spine. About the same
                                                                                                                                   evolving cast of pets                                                   time as the first surgery, Shelaine’s closest
                                                                                                                                   (currently six of them -                                                friend had surgery for scoliosis.They have been
                                                                                                                                   Dakota, Tory, and                                                       the Spine Disease Sisters ever since. In 2001, a
      •




                                                                                                                                   Wendy, the horses,                                                      MRI revealed bi-lateral acoustic neuromas and
                                                                                                                                   Misty the dog and the                                                   it was confirmed that Shelaine had NF2. She
                                                                                                                                   cats Cleo and Oreo).                                                    underwent gamma knife surgery for treatment
                                                                                                                                   They have lived in                                                      of one neuroma in August 2001 and surgery on
                                                                                                                                   Elizabeth for eight                                                     a second neuroma in July 2004. She has had
                                                                                                                                   years and their fun-                                                    headaches both before and after the surgeries.
                                                                                                                                   loving home is filled with family, friends and                           But she says clearly, “Don’t feel sorry for me.”
                                                                                                                                   love. Shelaine is a reflection of the love and                           She knows she is a model for others and says,
                                                                                                                                   encouragement she has received there.                                   “It makes me happy to see other kids with
                                                                 COLORADO CHAPTER • P.O. Box 101357 • Denver, CO 80250-1357




                                                                                                                                        She paints her fingernails to look like                             health care stuff smile…like yeah, I can deal
                                                                                                                                   watermelons, has a best friend who forms the                            with this.” No wonder her nickname is
                                                                                                                                   other half of a pair she refers to as the “Spine                        “Springy”.
                                                                                                                                   Disease Sisters”, and loves to read the Lemony                               A year after Shelaine’s NF2 diagnosis,Terri
                                                                                                                                   Snicket books entitled A Series of Unfortunate                          Hellickson was diagnosed with lymphoma.
                                                                                                                                   Events. In the typical array of classes, Shelaine’s                     After undergoing several rounds of chemo-
                                                                                                                                   favorite subject is math and she excels as a                            therapy, she was determined to be a candidate
                                                                                                                                   straight-A student. She is a forward on the                             for stem cell replacement.At the writing of this
                                                                                                                                   basketball team and fills her summer with                                article, the family is preparing for treatments
                                                                                                                                   softball games and basketball camp. Her church                          for both Shelaine and Terri.
                                                                                                                                   community and personal faith keep her                                        When she becomes angry, Shelaine
                                                                                                                                   outlook hopeful and focused. When not in                                converts her feelings into a positive attitude
                                                                                                                                   school, church, or on the basketball court,                             and focuses on her goals so that her mom
      •




                                                                                                                                   Shelaine works with a group of teachers or                              won’t have to go through any more trouble.
                                                                                                                                   tutors students in a school program called                              One last teen-age thought from “Springy”:
                                                                                                                                   H.O.P.E. She was chosen as part of the W.E.B.                           when asked to name a favorite hero, she said,“I
                                                                                                                                   program at Elizabeth Middle School. This                                consider myself as my hero.” This adult would
                                                                                                                                   program enlists eighth graders to help in-                              be proud to name her as a hero too.
                                                                                                                                   coming sixth graders adjust to middle school.

                                                                                                                                     Look inside for . . .
                                                                                                                                     Regular Features:                                                       Special Features:
                                                                                                                                      President’s Letter 2                                                    Book Review 2
                                                                                                                                      Contributors to this Issue 2                                            Interviews with CO-NNFF Board 5
                                                                                                                                      Donor Acknowledgements 2                                                Tax Benefits for Parents of Children
                                                                                                                                      Attic Adventure 3                                                          with Learning Disabilities 6
                                                                                                                                      Meetings and Events 4
                                                                                                                                      Resources and Opportunities 6
                                                                                                                                      Calendar 7

                                                                                                                              The opinions expressed in this newsletter are not those of the National Neurofibromatosis Foundation, but of members of the Colorado Chapter.
THE PRESIDENT’S LETTER                        attack will come from. Many of us feel
                                              similarly vulnerable to NF.
                                                                                              QUARTERLY DONOR ACKNOWLEDGEMENTS
Dealing with                                       Dealing with this uncertainty is a                           0 - $49
                                              very personal decision, and different                    Jeffrey & Karen Baron
Uncertainty                                   people have different coping
                                                                                                     Vearlon & Sharon Forbes
By Mark Ebel                                                                                             Charlotte Hagiwara
                                              mechanisms. For me, it takes a careful                        Jerry Johnson
                                              balancing of education and awareness                        Mary Laffrenzen
         ime and time again, I hear from      about potential problems that our                        Clyde & Marcia Miller

T        people living with NF that one
         of the hardest things to deal
with is the uncertainty about what the
                                              child may face, and a conscious effort
                                              to focus on all of his successes and joys
                                              of the moment. Again, this is not
                                                                                                          Marilyn Monsma
                                                                                                 Karon & Michael Montgomery
                                                                                                     George & Denise O’Neill
                                                                                                           Anna Palumbo
future holds. If there were a more            dissimilar from the balancing act that
typical "script" of what living with NF       we have all been forced to engage in                     David & Veronica Rau
entailed, we would be able to prepare         since 9-11.                                                  Kathy Schneider
                                                   I have heard people refer to both                  Kim & Sheryl Skattum
ourselves better for the future.
                                                                                                  United Way – Roger Williams
      In some ways, September 11 and          NF and 9-11 as events that triggered a
                                              loss of innocence. It is easy to have a                          $50 - $99
its aftermath has given everyone in our
                                                                                                     John & Eleanor Bowman
country a taste of what this                  positive outlook on life when the                   Terry & Anna Maria Richman
uncertainty feels like. Despite all of our    future is certain and rosy. The                            Dan & Traci Seiffer
efforts at security and preparedness,         challenge is to keep this outlook in the              Ronald & Barbara Seiffer
there is a fear that hangs over us that       face of the uncertainty that we all feel                      Dana Stanley
terrorists will find a weakness and            to a certain extent today. Seeking out                          $100 - $249
attack us again. We receive national          the positive things to focus on can take            Isadore & Eleanor Bonifas, Jr.
security warnings periodically, but we        effort, but it is an effort well worth                 Ray & Deanna Broussard
have absolutely no idea where the next        taking.                                                 United Way – D. Casler
                                                                                                          L.W. & Sarah Eye
                                                                                                Audrey Klein & Steve deCsesznak
                                                                                                      Steve & Roxann Deutch
                B      The Essential 55                                                            Albert & Eleanor Drumright
                O                                                                                       Thomas Hattenburg
                O      By Ron Clark                                                                     Henry & Joan Naour
                K                                                                                         M.W. & B.J. Roth
                             Back in January 2004, Stephen Tatum, the program                               Noel Waechter
                        director at Denver Academy, spoke to our local support                         Ray & Tricia Whynott
                 R group. One of the books he recommended was a quick read:                                   $250 - $499
                 E Ron Clark’s The Essential 55: An Award-winning Educator’s                                David Levine
                 V Rules for Discovering the Successful Student in Every Child.This                           $500 - $999
                               is a fifth
                  I book to Know, Igrade parallel to Robert Fulgrum’s Everything I
                        Need             Learned in Kindergarten.
                                                                                                              Albertson’s
                                                                                             ARC Thrift Stores (proceeds from sale
 Reviewed by     E           In The Essential 55, Clark has set out basic tenets of          of vehicles donated by Richard & Janet
 Catherine       W common courtesy applied to classroom management. A few                    Huck and David & Beth Sensenbaugh)
 Laskey                                                                                                   Eric & Jane Cahn
                        of my favorites are: answer all questions with a complete
sentence; if you win, do not brag; if you lose, do not show anger; respond to adults;                     Mary Todd Evans
make eye contact; and stand up for what you believe in. He adds a colorful vignette                  Jerry & Maureen Hunter
or two from his own experience to underscore each rule.                                                     $1,000 - $2,499
     Clark has achieved success in some of the nation’s most impoverished school             David & Beth Sensenbaugh or Friends
districts with classrooms of 35 students or more. He gives credit to his very proper                   of Jacob Sensenbaugh
North Carolinian grandmother for some of these lessons. Clark discovered that                                 Over $5,000
some children he was teaching did not have this type of influential parents or                  United Way – UPS Employees – Ft.
grandparents who could teach basic self-respect and respect for others. Once he                   Collins/Larimer County Area
established the rules, classroom instruction was a breeze. He deserves the 2001
Disney Teacher of the Year Award.                                                                CONTRIBUTORS TO THIS ISSUE
                                                                                            ◆ Editor: Kathleen Petersen
     If you are a student or parent, read The Essential 55 to remind yourself of how        ◆ Articles:
to interact with civility and courtesy.                                                       • Jane Cahn – 303-322-4194
                                                                                              • Mark Ebel – 303-734-9942
                                                                                              • Maureen Hunter – 303-926-1644
CORRECTION: In the Spring 2004 newsletter, an article entitled Insurance Coverage for         • Catherine Laskey – 303-734-9942
Neurofibroma Removal appeared. The article should have been attributed to Sally Stuart,      ◆ Donation List: Hilarie Watters
                                                                                            ◆ Distribution: Mary Evans and Mary Snyder
MSW, LICSW and Paul D. Mendelsohn. Also note that Mr. Mendelsohn is no longer the           ◆ Mailing List: Tom Hattenburg
person to contact regarding Medicare and Medicaid denials. Another article appeared in      ◆ Graphic Design: Amaranth Graphic Design
the NNFF (National newsletter) Winter issue, which gives further information on insurance                       Loveland, CO
coverage and will be reprinted in our next newsletter.                                      ◆ Printing: Business Printing, Inc.

                                                                     2
                         Grab a Cup and head for
                             an Attic Adventure!
                                        April
                                        Stanley
                                        with
                                        kitten
                                                                      Matthew
                                                                       White




                        Lynndzee
                        Feather
                                             Dillon
                                            Grayson

                         NF 2004 summer campers.Thanks to the generous support of the Colorado Chapter and Ginny’s Kids, all of
                         these youngsters discovered the joys of camping while living with special needs. April, Dillon, and Lyndzee all
                         attended the National Neurofibromatosis Foundation camp in Utah and Matthew attended Adams Camp here
                         in Colorado.




                                                                                       Congratulations to Kevin Cahn, a 2004
Chapter member Sandie Steffes participated in the Green Bay marathon on                graduate of Regis Jesuit High School, now at
May 23, 2004 with her daughter McKaila as her NF hero. “The road was                   Guilford College in Greensboro, North Carolina.
long, wet and cold, but as I promised, thoughts of each of you helped me               He is pictured with his parents, Jane and Eric
with my cause, helped me to stagger through Lambeau Field for the final                 Cahn, who gave him this message:
mile and cross the finish line! This was the most amazing accomplishment                “Son, Teacher, Giver of joy, patience, tolerance,
in my life! And to know that you helped me raise almost $3,000 for NNFF,               kindness, gentleness, enthusiasm and hope.
makes this all so much more surreal.” Sandie is pictured with her Green Bay            Keep learning about yourself – the world is
brother Leonard Savage.                                                                waiting for you.”



                                               This is your chance to publish your hidden talents!
              Call or e-mail me with your ideas anytime, but October 1, 2004 is our deadline for Winter 2004 Newsletter.
                                Your editor – Kathleen Petersen (303-797-1821) or katmoncue@att.net

                                                                  3
                               MEETINGS and EVENTS
PEDIATRICS 2004
On April 23, 2004, our Colorado Chapter
of the National Neurofibromatosis
Foundation participated in Pediatrics
2004, a medical conference, sponsored by
Colorado Chapter of American Academy
of Pediatrics and The Children's Hospital.
NNFF-CO Board members Eric Cahn,
Jane Cahn, Andrea Dukakis, Mark Ebel
and Maureen Hunter hosted an NF
exhibit open to pediatricians, physicians     At Denver’s May 15 support group meeting, 8 teens gathered to share their
assistants, nurses and other healthcare       experiences living with NF. Middle school peer relationships are a challenge but the
providers as part of our ongoing efforts to   older teens reassured the middle schoolers that these relationships would improve.
increase awareness and educate healthcare     Although dating is of interest to several, it is still a stretch.The panel agreed that
professionals about NF. Our board             about 99.9 percent of the time, being a teen with NF is like being any other teen . .
members dialogued with several                . tricky at times, but friends are the secret of success. Pictured are:
healthcare professionals and provided         Top Row: Kristina Prentice, Moderator Jane Cahn, and Andrew Walker. Bottom
them current educational materials about      Row: Jennifer Lambrick, Leanna Taylor, Lyndzee Feather, Kevin Cahn. Not
NF.                                           pictured: April Stanley, Aspen Petersen.


                                     NF TODAY SYMPOSIUM
                               An Update for Patients, Families and Healthcare Providers
                          Saturday, October 23, 2004 from 8:30 a.m. to 3:00 p.m.
          The Children’s Hospital, 6th floor – Lecture Hall, 1056 East 19th Avenue, Denver, Colorado
 We welcome individuals with NF and their family, friends, healthcare professionals and educators involved in their care.
 We will provide a comprehensive overview of NF. Some topics are current status of research and treatments, current
 clinical trials, genetic testing, how to cope with learning disabilities and how to explain NF to a child.
 DETAILED INFORMATION ABOUT SYMPOSIUM SPEAKERS, SCHEDULE AND REGISTRATION
 FORMS WILL BE MAILED TO YOU INDIVIDUALLY. You can also visit our website at www.nf.org, and click
 on “activities by state”.


NF TODAY SYMPOSIUM VOLUNTEERS NEEDED:
We still need the following volunteers to prepare for and participate in the symposium:
1 person to assemble symposium presentation storage binders
1 person to make confirmation calls
2 people to help with registration/check-in on the day of the event
1 person to assist speakers on the day of the event
1 person to help set up and direct people to lunch
2 or 3 people to host the Colorado NNFF table during the breaks and at lunch
To volunteer or get more information on the symposium, email or call Maureen Hunter at mohunter7@aol.com or 303-
460-8313.

NF2 ANNUAL MEETING:
Plan now for the annual NF2 meeting. Dates and location will be available soon at www.nf2crew.org

                                                             4
INTERVIEWS WITH NATIONAL NEUROFIBROMATOSIS FOUNDATION
        COLORADO CHAPTER BOARD OF DIRECTORS

Name: Mark Ebel
Board Position: President
Profession: Vice President and General Counsel for Eyeris, Inc., a software company offering a profitability analysis
solution.
Relation to NF: Our 31⁄ 2-year-old son, Davis, is likely to have NF1.
Joined Board for: I have always participated in charitable endeavors. I decided the best organization I could volunteer
for was one that could help my son. Participation also offers me the benefit of receiving more information about the
condition.

Name: Jane Cahn
Board Position: Support Group and Outreach Coordinator
Profession: Social Work
Relation to NF: I have an 18-year-old son Kevin with NF.
Joined Board for: When I joined the Board 10 years ago, the Chapter was struggling for leadership and I wanted to help
revitalize it.

Name: Andrea Dukakis
Board Position: Secretary
Profession: Freelance reporter, work mostly for public radio programs
Relation to NF: My daughter Jobie, who is 3 years old, has NF1.
Joined Board for: I want to help provide more awareness about NF and raise money for research.

Name: Hilarie Watters
Board Position: Treasurer
Profession: Police Officer for 14 years and am now home with our three children.
Relation to NF: Our 5-year-old son Paul has NF1.
Joined Board for: I want to help educate other families about NF and offer them support.

Name: Susan Toomey
Board Position: Board Member
Profession: Genetic Counselor
Relation to NF: I worked for 5 years as the Neurocutaneous Clinic Coordinator at the Children’s Hospital of Denver.
Joined Board for: To provide a medical based understanding to the needs of the Colorado Chapter of the NNFF.

Name: Maureen Hunter
Board Position: Board Member
Profession: Public Health/Community Education
Relation to NF: My 8-year-old daughter Jane has NF1.
Joined Board for: I wanted to expand my knowledge, stay current with the latest research as well as contribute my time,
energy and skills to the NF community.

Name: Tom Hattenburg
Board Position: Board Member/Manage database and mailing list
Profession: Flood Map Analyst
Relation to NF: I have NF1.
Joined Board for: To get more involved with the support group as well as providing me perspective.
                                                             5
                  RESOURCES and OPPORTUNITIES
CAR DONATION PROGRAM                                 (Unwanted Cars Hauled Away!)
The Colorado Chapter of NNFF can accept any car you wish to donate.The process is simple, and is usually completed
within a week.To donate your car to NNFF, please call the Vehicles for Charity (VFC) donation line at (303) 308-2400,
and they will walk you through the process.VFC administers the car donation process for numerous charities, so please
make sure you designate NNFF as your charity. Also, please report your donation to Mark Ebel (President of NNFF-CO)
at 303-734-9942. All donations are tax deductible for the fair market value of the vehicle (obtained by going to
www.edmunds.com or www.kbb.com).

COLORADO NNFF/ALBERTSON’S
COMMUNITY PARTNERS:
Are you a frequent or periodic Albertson’s shopper? The
attached card will allow Colorado NNFF to benefit from your
Albertson’s purchases. Ask the checker to scan the attached
card BEFORE you pay for your groceries. Albertson’s
Community Partner program will then donate a portion of
your purchase back to our Chapter.THERE IS
ABSOLUTELY NO COST TO YOU FOR USING THE
CARD! If you would like additional cards for friends or
family, contact Jane Cahn at 303-322-4194 or
JANECDENVER@aol.com

FYI: COMBINED FEDERAL CAMPAIGN
The contribution number for the national NNFF organization is #0550 for this campaign.


Tax Benefits for Parents of Children with Learning Disabilities
     Did you know, if you have a child with a severe               principal reason for attending the school.
learning disability, you may qualify for potential tax                 You can include, under medical expenses, fees you pay
benefits? This information is to alert you to the possibility       on a doctor’s recommendation for a child’s tutoring by a
of tax benefits and should not be considered legal advice.          teacher who is specially trained and qualified to work
Always talk to your tax advisor!                                   with children who have learning disabilities.
     The IRS has ruled that tuition costs for a dependent              For more information obtain a copy of IRS
attending a school that furnishes special education to help        Publication 502: Medical and Dental Expenses and discuss
a child overcome learning disabilities may be included as          with your tax advisor whether this applies to you.
a medical expense when taking itemized deductions using
the Schedule A tax form. A doctor must recommend that              Taken from LDAAlaska News,Volume 3, Issue 1 Winter 2004
the child attend the school. Overcoming LD must be the             and the IRS Publication 502


      REQUEST FOR E-MAIL ADDRESSES                                               Living with Pain
           The Colorado Chapter needs your help                                      is an article available
                   with electronic access.                                            from Jane Cahn at
        We would like to develop a larger e-mail list so
             we might relay important information                               JANECDENVER@aol.com
            to Coloradoans between newsletters.                                    or 303-322-4194.
             To add your name to our e-mail list,
              please contact Tom Hattenburg at                              Let Jane know if you would like a
                   tomh711@comcast.net                                     small group discussion on the topic.

                                                               6
                                            CALENDAR
DENVER METRO NEIGHBORHOOD NF GATHERINGS FOR ’04-’05:
Meet your neighbors as Chapter families open their homes.We hope you will find a meeting close to you.We will have a
simple program with lots of time for conversation.

                                        Same meeting time: 1pm - 3pm

September 18 – Aurora (SE) – home of Cindy & Dan Floro – 3655 S. Arogonne St., tel. 303-699-2029

October 23 – Symposium at The Children’s Hospital (see symposium announcement, page 4)

November 20 – Highlands Ranch – home of Carol and Steve White – 6568 E. Jackson Lane, Highlands Ranch,
              tel. 303-791-3375

                   We will meet in homes in Wheat Ridge, Louisville and Littleton in 2005.

                                      Questions? Call Jane Cahn 303-322-4194




                                                  Colorado Springs Chapter members try to put the puzzle pieces together at a
                                                  picnic in the home of Carol and Nick Ferrara in early June. Pictured are
                                                  April Stanley, unidentified siblings, Sarah Ferrara, Carol Ferrara, and Nick
                                                  Ferrara. The Colorado Springs Chapter has regular meetings to serve their
                                                  members. If you live in the Colorado Springs area, please contact Carol
                                                  Ferrara (719-596-5182) or Dana Stanley (719-574-1754).




 ADDRESS CHANGE COUPON:
 Moved recently? We need your help to keep up to date. Would you like to report a change in
 your newsletter status? Let us know by e-mailing tomh711@comcast.net with the information
 below or mail the information to NNFF CO Chapter, Box 101357, Denver, CO 80250-1357.


 Name:

 Old Address:

 Current Address:

                       ❑   Stop Newsletter                        ❑    Continue Newsletter


                      WINTER 2004 NEWSLETTER DEADLINE
                               OCTOBER 1, 2004
                                                          7
neuro•fibroma•tosis
 THE NATIONAL NEUROFIBROMATOSIS FOUNDATION, INC.
                                                         NON-PROFIT ORG.
                                                           U.S. Postage
                                                              PAID
                                                            Denver, CO
COLORADO CHAPTER P.O. BOX 101357 DENVER, CO 80250-1357    Permit No. 5323




                                       To:

				
DOCUMENT INFO
Shared By:
Categories:
Tags:
Stats:
views:22
posted:8/14/2011
language:Swedish
pages:8