FALL 2004 SPOTLIGHT
A “Springy” Philosophy of NF2
By Jane Cahn
n June of this year I
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
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
Karon & Michael Montgomery
George & Denise O’Neill
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.
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.
Grab a Cup and head for
an Attic Adventure!
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
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 firstname.lastname@example.org
MEETINGS and EVENTS
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 email@example.com or 303-
NF2 ANNUAL MEETING:
Plan now for the annual NF2 meeting. Dates and location will be available soon at www.nf2crew.org
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
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
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
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.
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).
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
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
firstname.lastname@example.org small group discussion on the topic.
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,
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 email@example.com with the information
below or mail the information to NNFF CO Chapter, Box 101357, Denver, CO 80250-1357.
❑ Stop Newsletter ❑ Continue Newsletter
WINTER 2004 NEWSLETTER DEADLINE
OCTOBER 1, 2004
THE NATIONAL NEUROFIBROMATOSIS FOUNDATION, INC.
COLORADO CHAPTER P.O. BOX 101357 DENVER, CO 80250-1357 Permit No. 5323