One Family`s Thanks - Eastern PA Down Syndrome Center

Macungie Minstrelaires
Find out more about this
wonderful group that is
supporting the EPDSC!
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EPDSC in the News
See all of our friends who
have attended some of
our great events lately.
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East Stroudsburg U.
Read about how the
students enjoyed their
first year of college!
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Co-pays for Medicaid?
The DPW has given the
“green light” for co-pays
for kids with disabilities.
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Updated DS Guidelines
A revised clinical report
updates guidelines from
birth to age 21.
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Alternative Therapies
Guidance about when
and how to consider
them for your child.
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One
Family’s
Thanks
We would like to express our heartfelt thanks
to our entire EPDSC family for the incredible
amount of love, compassion, friendship,
and kindness that you have showered on us
throughout our daughter Sarah’s 28 months of
treatment for leukemia.
In March of 2009, our worst fears came to
life when we received the crushing news that
Sarah had cancer. Our very first visitor on that
awful day was a friend from the EPDSC who
arrived only hours after the diagnosis—it was a
sign of all the wonderful support to come.
During Sarah’s initial 3.5 week stay in the
hospital, we were flooded with visitors, meals,
e-mails, phone calls, gifts for both of our girls,
and countless other acts of kindness from this
amazing community we all belong to.
The first 8 months were the harshest.
Treatment was relentless, Sarah was extremely
weak & frail, we were consumed with fear,
the end of treatment was over 2 years away,
and our lives were completely turned upside
down—it was a scary, hard, and lonely
time. While nothing could ease the horror
of watching Sarah struggle through cancer
treatments, we can honestly say that our
journey would have been so much harder
without all of you.
Consistently throughout her illness, from
the darkest early days, to the less intense
months of the past year and a half, some of
Sarah’s biggest cheerleaders and most visible
supporters have been the friends we have
made through the EPDSC. You came out in
force when we were at our lowest, and you
continued to let us know how much you were
thinking of her during the less eventful times.
When illness would force us back into
the hospital, our phones would ring off the
hook with concern for Sarah, offers of help
with our older daughter, and messages of
encouragement would pile in to Sarah’s
medical webpage. The genuine displays of love
you expressed for our daughter meant the
world to us – Thank you so very much.
After 2+ years, Sarah officially completed
her cancer treatments when she took her last
chemo dose on July 24th. As we stop to catch
our breath and prepare for the next hurdle of
post-treatment challenges, we look back with
amazement at the way Sarah thrived during all
of this. Her strength, resilience, good nature,
and graceful spirit continually shined through,
providing the rest of us with a roadmap of
how to get through the mess of cancer. She
never let leukemia define who she was, and
she continued to be the same delightful kid
who would wake up each and every morning
expecting to have a good day.
We are relieved to have made it through to
post-treatment, and are extremely grateful for
the numerous sets of hands that helped to hold
us up while getting there. We are so lucky to be
part of such a tremendous group of families –
you are all terrific.
With much love and gratitude,
Laura, Steve, Katie and Sarah Neary
Board of Directors
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Kevin Neiley
Mike Carney
Jason Anderson
Chris Farrell
Steve Neary
Sue Cully
Bobby Lanyon
Ali Heller
Jennifer Miller
Anita Ellsberry
Michelle Levene
Liz DeSantis (at large)
Bill Meltzer (at large)
Keith Frisch (at large)
Sue McGorry (at large)
Letter from the President
Hello Friends:
We are half way through the summer and I hope everyone
has had an enjoyable one to this point. The EPDSC has had
the summer picnic, golf tournament and the just completed
Lose the Training Wheels program. I hope you were able
to participate in one of the events. We have more to come
in the following months including the Buddy Walk. I look
forward to seeing everyone at this major fundraising event.
Officers
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Kevin Neiley, President
Mike Carney, Vice President
Steve Neary, Treasurer
Sue Cully, Secretary
Staff
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Don Levick, M.D., MBA, Medical Director
Renee Morrow-Connelly, D.O. Pediatrics
Scott Rice, M.D., Pediatrics
Amy Healy, MS, OTR/L
Andrea Meeker, MS, OTR/L
Kelly Nelson, MS, OTR/L
Patti Mertz, Center Coordinator
Maria Floryshak, Center Coordinator
Anne Marie Dolinish-Meltzer, RN,BSN,
Center Coordinator
Claire Dainese, Office Assistant
Diana Santoro, Newsletter
I would encourage everyone to get involved and the Board
welcomes any suggestions on what we can do to service
you better. Please enjoy the rest of your summer.
Sincerely,
Kevin
The Macungie Minstrelaires
The Macungie Minstrelaires was organized
in 1957 to perform a minstrel show for the
Macungie Centennial. In 1958 the group officially
organized and took the name of "The Macungie
Minstrelaires." Today, the Macungie Minstrelaires
is comprised of men and women from all walks
of life and professions residing in Lehigh, Berks,
and Northampton counties. Their annual musical
production continues to be a theme-based show, held
the last weekend in October and first weekend in
November, for a total of four evening performances
on Fridays and Saturdays, and also two Saturday
matinee performances.
The group's main goal is to present a
professional, annual musical production for the
enjoyment of our audience and allowing for a
portion of the show proceeds to be donated to local
families, organizations, and individuals in need.
Children and teens with Ds, and their siblings,
(under 16) who enjoy singing are welcome to join
the children's cast of the Macungie Minstrelaires.
Caitlin Polek performed in last year's show and will
be a part of the group again this year. Practices will
begin the end of August on Monday nights at the
Macungie Fire Hall in downtown Macungie. Some
Sunday practices will be held in late September and
in October. Parents are encouraged to help usher
or be part of the stage crew. This is a wonderful
opportunity for your children who love to perform. Call
Joan Glover, Community Chairperson, at 610 349 7791
for more information or to sign up.
This year's show, "From The Macungie
Minstrelaires, With Love," celebrates the many
different types of love relationships we all have in our
lives -- love of family, friends, our fellowman, music,
animals, our country, and of course, romantic love.
Come join us for a show filled with wonderful music
performed by our adult and kids' chorus, dance
numbers, and comedy skits, which celebrate love and
remind us all to be kind to each other!
Show dates are October 28, November 4 at 8:00
p.m. and October 29, November 5 at 2:00 p.m. and
8:00 p.m. at Lower Macungie Middle School. EPDSC
members can buy one ticket and get one free. Call the
Center at 610-402-0184 by October 15th to order. Ticket
prices are: adults/$12, seniors(62+)/$10, students(K-12)/$8.
Group rates are available. For more information visit
the web site at: www.macungie-minstrelaires.org.
A portion of the proceeds from this year's
performance will be donated to the EPDSC. Please
support the Minstrelaires by attending one of their
performances. Ask your family and friends to join you.
EPDSC’s 4th Annual Golf Tournament A Big Success!
Rain, thunder and lightning could not stop the fourth annual EPDSC golf
tournament at Whitetail golf course . Over 100 golfers enjoyed a fun filled day
of golf due to the tremendous support of our volunteers. It was great to see
many new faces among the familiar ones. A score of 64 took first place but the
true winners are the friends and families we support. We exceeded our financial
expectations which will allow us to provide continued support for the EPDSC’s
goals and objectives.
We would like to thank our premier sponsors of PPL and WFMZ
as well as other sponsors that helped make this day happen.
In addition, special thanks to our committee, Michael Carney,
Kevin Neiley, Rob Touzeau, Doug Minnix and Maria Floryshak.
The fifth annual golf tournament is scheduled for June 2, 2012
at Whitetail Golf Course (subject to change). We are currently
looking for a chair person to lead this committee. If you are
interested please contact the EPDSC.
3
The following EPDSC members recently
participated in The Pennsylvania Special Olympics
Summer Games held this past June at The
Pennsylvania State University in State College.
Samantha Lurwick
Kelsey Anthony
CJ Laubach
Kyle Woomer
Jessica Floryshak
Matthew Paladino
3 X 3 Basketball
Basketball Skills and Drills
Artistic Gymnastics
Basketball Skills and Drills
Aquatics
Aquatics
Besides participating in their competition
events, the athletes enjoyed a variety of
activities including: sports fest, the band
concert/dance, opening ceremonies with
the PSU football team, hanging out with
fellow athletes and a visit to the creamery.
EPDSC co-sponsored camp helps people with special needs
‘lose the training wheels’
The blazing morning heat didn’t slow down the 30 bike-riders. They
were intent on riding on their own, intent on losing their “training
wheels.”
The mid-July Lose the Training Wheels bike camp was sponsored
in the Lehigh Valley through a partnership of the Eastern Pennsylvania
Down Syndrome Center and Diakon Lutheran Social Ministries. The
camp is a national program that teaches individuals with special needs
to ride a conventional two-wheel bicycle.
With 80% of children diagnosed on the autism spectrum and 90% of
those with Down syndrome never learning this basic “rite of passage”
skill, the program was developed to make the dream of riding a bike a
reality for camp participants.
Even more than its obvious physical and recreational benefits,
learning to ride a bike opens the door for greater social inclusion,
provides a method of transportation, and instills confidence as
participants master a skill they had come to believe was beyond their
reach.
The program uses a special “roller bike” to help participants
advance step-by-step, at their own pace, toward riding a two-wheel
bicycle comfortably. On a roller bike, a flat roller pin replaces the rear
wheel, which provides the rider with greater stability during the learning
phase. Over the course of the camp, a professional bike technician
replaces each participant’s roller pin with more tapered versions,
through eight levels until the roller nearly matches a conventional rear
tire.
More than 60 volunteers supported and encouraged participants
as they confronted their fears and apprehensions in learning to manage
the instability of their bikes.
The Lehigh Valley camp was made possible through
donations from individuals, corporations, and foundations,
including lead sponsors, the IronPigs Charities and Bike Line
of Allentown and Bethlehem.
And there is no question, the camp was a success: By
Friday, 100% of the participants left with an overwhelming
increase in self-confidence and pride, and approximately 80%
of the participants were riding their own two-wheel bike, with
minimal or no support—with the others well on their way to
enjoying independent bike-riding.
EPDSC Summer Picnic!
Food, fun and sun were all part of the day at the EPDSC’s annual
picnic held June 18th. Over 100 family members gathered
together to share in the day. The crayon moon bounce and the
swing set were a big hit with the youngsters. Others enjoyed
the “no rules“ volleyball games. Many were just happy sitting,
talking, reuniting with friends and meeting new families. Of
course, we all got to sample some wonderful recipes from
appetizers to entrees to dessert. Our sincerest thanks to our
hosts, The Meltzer Family, for their hospitality and generosity.
5
A college adventure begins...
August 2010: Orientation
The roomed buzzed with excitement as the six
students gathered in preparation for their first year
of post-secondary education at East Stroudsburg
University. With their parents’ encouragement and
support, they were about to enter a new chapter
in their lives as they prepared to embark on an
adventure that years ago was just a dream.
What made this orientation day different from
that of their freshman peers
is that these young adults
have Down syndrome.
As their classmates
headed off to college, many
high school graduates
with Down syndrome have
nowhere to go. Kutztown
resident Patti Mertz, whose
son has Down syndrome,
attended a conference seven
years ago sponsored by the
National Down Syndrome
Society. There she learned
about a college program for
students with intellectual
disabilities.“
That conference inspired
me to work on developing a similar program for my
son and other local students,” she said.
Professor Domenico Cavaiuolo, along with
the entire Department of Special Education and
Rehabilitation at ESU, opened its arms to the
opportunity after Kutztown University showed no
interest in the proposal. Working closely with the
dedication and expertise of several individuals, the
Career and Independent Living and Learning Studies
(CILLS) program was established.
CILLS offers students a coordinated and
comprehensive curriculum for three years. The
program includes academic experiences, vocational
development and learning independent living,
social and leisure skills. Transition services helps
the students achieve their desired post school goals
or outcomes, whether that be post-secondary,
employment, training or independent living.
The CILLS program was sponsored in part
by a generous grant from the Eastern PA Down
Syndrome Center. The grant was responsible for
start-up costs and offers financial support for the
first three years until the program becomes self
-sustaining.
After unpacking and having a chance to
settle into their new surroundings at ESU,
students Lauren Coni, Jessica Floryshak, Sam
Heller, Bryan Meltzer, Alec Mertz and Matt
Paladino were about to say goodbye to their
parents, most for the first time. Only Floryshak
had spent time living outside her home prior to
entering the university.
Coni, Heller and Meltzer
are graduates of Parkland
HS. Floryshak graduated
from East Penn, Mertz from
Kutztown, and Paladino
from Wallenpaupack Area
HS.
With a new set of rules,
chores, homework, and
lights out at 10 p.m., the
students, with the help of
their mentors, embraced
the opportunity for
independence and growth.
“I’m excited” said Sam
Heller, who seemed not to
be phased at the prospect
of staying behind as his
parents prepared to head back to Orefield and
the only home he had ever known.
May 2011: Looking back at a year of growth
It was a year of learning and growth that
didn’t go without it’s unanticipated challenges.
Living away from home gave the students
freedom to make decisions regarding dinner
time and bed time. They had to learn that
staying up late at night would make it difficult
to get up in the morning. House Mentors had to
decide when to intervene and when to let them
make their own decisions.
Personal relationships bloomed as students
spent time together and became familiar with
each other. Sexual awareness lead to a desire
to be intimate. The relationships were confusing
go to college.”
for the students and trained professionals
Professor Domenico Cavaiuolo, in a report
helped them to understand their sexual
following the first year of the CILLS program
awareness. Parents were involved and their son
entitled “Hey, I’m going to college,” wrote
and/or daughter understood their relationship
that the student’s personal life has clearly
was only to be “holding hands and kissing.”
been enriched as measured by the number of
And as they learned, they grew. “Personally,
neuro-typical friends they had prior to entering
the most positive experience has been the
the program and the number they currently
growth I have seen in my son Alec,” said
have. They also have taken advantage of the
Mertz. “He is more confident, independent
opportunity to audit traditional classes of
and mature. As a parent it is often difficult to
interest that are available to all students at the
“let go.” However, this experience has been the
university. For example, one student is auditing
“perfect” environment for this next step in his
a jazz music class and another is in a dance
life. He is away from home developing more
class.
independence in a natural
Cavaiuolo went
setting with his typical
on to write that the
peers while receiving
self determination and
the necessary supports.
commitment of these six
THE STRUGGLE: Parents have always
Alec’s dream has been to
individuals will enable
banded together in groups to fight for their
go to college, live on his
other students with
children with Down syndrome. According
to the article “The Power of Parents in
own (independent of his
cognitive disabilities
Down Syndrome History,” as early as the
parents) and get married.
to also participate in a
1930s groups united on a national level
He is well on his way!”
college experience. This
so much more could be accomplished.
Mertz goes on to
is the only comprehensive
Back then, children with Down syndrome
were excluded from school, discriminated
say that the program
program (including both
against, and shunned by the general
far exceeded her
academic and residential
public. The National Association for Down
expectations. The
components) offered
syndrome was founded in 1961 by Chicago
friendships between the
at a state university in
parents who refused to adhere to the advice
of doctors and chose to keep and raise their
students with disabilities
Pennsylvania.
children at home.
and their typical peers has
Mertz concluded,
been astonishing. The
“My hope for the future
dedication and expertise
includes the program
provided by the program
becoming a nationally
director, coordinator and mentors has been
recognized program because of its sustainability
critical to its success.
and success of the “Graduates.” I also dream of
The students participated in extracurricular
the program ultimately becoming a model for
activities which included pep band, track and
other universities throughout PA and the United
theatre. They worked out and joined in activities
States. Finally, that this program will create a
at the Recreation Center on a daily basis. They
greater awareness of the potential of individuals
also had the opportunity to be Guest Speakers
with cognitive disabilities!”
at two conferences where they shared their
The parents of these six children, and all
experiences regarding the CILLS program.
parents of children with cognitive disabilities,
Social activities with friends and peers were
continue their fight. And each battle won raises
planned on a weekly basis.
the bar for the future of all children with Down
Maria Floryshak who’s daughter Jessica is
syndrome and offers encouragement, support
a student said “At no time did she ever want
and hope.
to come home. The biggest thing for me is
When Sam Heller’s friends ask, “How do
her boost in confidence and her blooming
you like college and being on your own?” Sam
independence. It is emotional in the sense that
replies, “I love it, I love it, I love college.”
when she was born no one ever said she could
7
PA Legislature gives the
Department of Public Welfare
green light for copays on
services for children with
disabilities
On June 30, the PA General Assembly enacted
significant changes to the Public Welfare Code which
governs many of the Department of Public Welfare’s
(DPW) programs, including Medical Assistance.
These were signed into law by the Governor on
June 30 as Act 22 of 2011. Generally speaking, these
changes grant DPW the authority to make significant
changes to Medical Assistance benefits and provider
reimbursement rates without the usual oversight by
the General Assembly or the Independent Regulatory
Review Commission.
Among the changes made, was the express
grant of authority to DPW to charge copays for
services to some children under 18 with disabilities
that are covered under Medical Assistance. DPW
will be able to require providers to charge families
a copay for services their children receive under
Medical Assistance. The copays would not apply to
children on SSI or families whose children receive
cash assistance. The copays could apply to children
whose family income is above 200% of the federal
poverty level. Those amounts, by family size, are
below:
Household
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Will out of pocket medical costs be deducted in
determining family income for copay purposes?
On which services will copays be imposed?
Will copays be imposed on each unit of service,
each hour of service, each visit, per day?
Will there be a cap on the total amount of
copays?
Will copays be imposed on services authorized
but not delivered?
Who collects the copays?
What happens if the family can’t or doesn’t pay
the copay?
Will there be any exemptions, say for example,
children on waivers?
Monthly Income
Annual Income
(200% of poverty) (200% of poverty)
2
$2,452
$29,420
3
$3,090
$37,060
4
$3,725
$44,700
5
$4,362
$52,340
6
$5,000
$59,980
7
$5,635
$67,620
8
$6,272
$75,260
It will now be up to DPW to make a number of crucial
policy decisions in developing these copays. Below
are a few of the critical issues DPW will need to
address:
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How much will the copays be?
Will they vary based on income?
How will income be determined? Gross or take
home?
Unfortunately, DPW will be able to make these
crucial policy decisions without oversight by the
legislature or the Independent Regulatory Review
Commission. It appears that DPW can avoid the
regulatory process and just publish a notice in the
official state publication — the PA Bulletin — that will
“set forth the copayment schedule”.
This means that it will be absolutely essential
that there be an open and inclusive process to obtain
input from affected families and providers to address
the issues above and others. The Health Law Project
looks forward to working with family and advocacy
organizations as well as providers to advocate
with DPW.
American Academy of Pediatrics (AAP) updates guidance on caring
for children with Down syndrome
A revised AAP clinical report advises physicians and parents on the
optimal care of children with Down syndrome from the prenatal
period to age 21.
The report, Health Supervision for Children with Down
Syndrome, in the August issue of Pediatrics (2011;128:393-406;
http:/​/p​ ediatrics.aappublications.org/​cgi/​doi/​10.1542/​peds.20111605), reflects contributions from 19 AAP and several outside
pediatric subspecialty groups, said Marilyn J. Bull, M.D., FAAP, lead
author from the AAP Committee on Genetics.
Medical management, home environment, early intervention,
education and vocational training “can significantly affect the
level of functioning of children and
adolescents with Down syndrome and
facilitate their transition to adulthood,”
the report states.
Key stages of care
About one in every 700 births
results in a child with Down syndrome.
How the message about the diagnosis is
delivered may set the stage for the life
of the child. The report gives tips on
what to cover in those talks.
Children with Down syndrome
may grapple with problems such
as congenital heart defects, hearing
loss, obstructive sleep apnea, otitis
media, vision problems and neurologic
dysfunction. The report outlines care or
guidance needed, from examinations to
anticipatory guidance.
The average lifespan of people with Down syndrome has
increased from 25 years in 1983 to 60 years, an increase largely due
to improvements in cardiac, hematologic and endocrine care, said Dr.
Bull, medical director of the Riley Hospital for Children at Indiana
University’s Down Syndrome Program and chair of AAP District V.
Because some pediatricians see only a few children with
Down syndrome, Dr. Bull suggested posting the link to the report in
patients’ electronic health record or placing a PDF in their paper files
At least yearly, pediatricians should discuss with parents
personal support available to the family; participation in a familycentered medical home; age-specific Down syndrome-related
medical and developmental conditions; financial/medical support
programs; injury and abuse prevention; and nutrition and activity for
appropriate weight.
Children with Down syndrome function more effectively in
social situations than would be predicted. In fact, parents need to
hear of the many positive outcomes of these children and their
effects on the family, Dr. Bull said. “The goal is to be positive, but
realistic.”
Updated guidance
Children with Down syndrome are at increased risk of
atlantoaxial instability. However, not until age 3 years will they
have adequate vertebral mineralization and epiphyseal development
for accurate radiographic evaluation of the cervical spine. Plain
radiographs do not predict well which children are at increased
risk of developing spine problems. Therefore, routine radiologic
evaluation of the cervical spine in asymptomatic children no
longer is recommended.
For patients with possible symptoms of atlantoaxial
instability, a plain cervical radiograph in the neutral position
should be obtained. If significant radiographic abnormalities
are present, no further X-rays should be taken, and the patient
must be referred to a pediatric orthopedic surgeon or pediatric
neurosurgeon with expertise in atlantoaxial instability. Not all
professionals are knowledgeable in this regard.
“Parents have brought a child ‘walking funny’ to an
emergency department for evaluation,” Dr. Bull recalled. “And
then the ED would X-ray the child’s hips and say
nothing is wrong. But they were not aware of the
importance of evaluating the cervical spine.”
Pediatricians should advise parents that
participation in some sports places their child at
increased risk of spinal cord injury.
Physicians also should be aware of
symptoms that might indicate celiac disease. For
those children, obtain a tissue transglutaminase
immunoglobulin A (IgA) level and simultaneous
quantitative IgA. Abnormal lab values require
referral for specialty assessment. Evidence does
not show routine screening of asymptomatic
individuals is beneficial.
Sleep apnea also is a concern, and all
patients should be referred to a pediatric sleep
lab for a sleep study or polysomnogram by age 4,
if possible. Those with symptoms of obstructive
sleep apnea or abnormal sleep study results need
to see a physician with expertise in pediatric
sleep.
Sexuality is addressed in the report, which recommends that
parents be educated about the increased risk of sexual exploitation
and the need to use accurate terms for genitalia and other private
body parts when these areas are discussed or examined. Remind
children that their body is their own.
“As with any child, you should start (developmentally
appropriate discussions) early — at least by age 4 years — and not
wait until they are 13 to discuss appropriate behaviors,” Dr. Bull
said.
With regard to the use of growth charts, pediatricians should
monitor weight and follow weight-for-height or body mass
index trends at each visit. Plot growth using the standard growth
charts of the National Center for Health Statistics (NCHS) or the
World Health Organization (WHO). The previously used Down
syndrome-specific growth charts no longer reflect the current
population and, until new research quality standards are developed,
the NCHS or WHO charts should be used.
Parents also should understand the importance of their child’s
communication skills, including the need for regular checks of
hearing and vision, to maximize the ability to communicate.
“These skills are what can make a difference as they mature
— getting invited to birthday parties or being hired for a job, for
example,” Dr. Bull said.
Finally, the report emphasizes the critical need for additional
research.
Copyright © 2011, The American Academy of Pediatrics
9
Alternative Therapies
What kinds of claims are made about
alternative therapies?
Many parents call asking about alternative therapies
for their children and family members with
Down syndrome. This article from NDSS helps to
explain what therapies are proven to have
beneficial results and those that have no research to
back their claims. Please feel free to call our
office with additional questions.
Alternative therapies include a wide range of
theories and treatment practices. In the U.S., an
alternative therapy is any therapy that is not
considered traditional and is typically not taught in
medical school.
What kind of alternative therapies are
available?
Various traditional and alternative treatment
methods for Down syndrome have been popular
over the years including the use of pituitary
extract, glutamic acid, thyroid hormone,
5-hydroxytryptophan, dimethyl sulfoxide (DMSO),
dihydroepiandosterone, sicca cell therapy and
growth hormone. Some treatments, such as sicca
cell therapy, have proven to be dangerous.
More recently, the orthomolecular approach to
treatment using various combinations of vitamins,
minerals, enzymes and amino acids have been
revisited. Generally, alternative therapies for Down
syndrome fall in and out of popularity through the
years.
Many of the alternative therapies, particularly
those termed “holistic,” are aimed at treating the
body as a whole, rather than as a disease or a
symptom. Most of these therapies have not
made claims for people with Down syndrome that
have been any different from the claims they
have made for the general population. However,
some therapies have claimed to improve motor
and cognitive functions as well as growth and overall
activity specifically in persons with Down
syndrome. Some have claimed to change some of
the physical features of Down syndrome to a
more “normalized” appearance and to reverse
intellectual disability.
Have any of these claims been scientifically
proven?
Although varied treatments have been in use for
many years, available research studies are often
limited. Observation and experiences are often the
first step in the research process. However,
while anecdotal successes can be exciting and
increase popular interest in a particular therapy,
rigorous scientific study is still the benchmark by
which treatments are held as to their effectiveness
and safety. As more and more physicians in the U.S.
are becoming familiar with alternative and
complementary treatments, parents should discuss
any potential new treatment with their doctors
to learn more about any known benefits and side
effects.
Is the use of alternative therapies
recommended?
NDSS and other organizations interested in the
welfare of persons with Down syndrome, such
as the National Down Syndrome Congress, the Down
Syndrome Medical Interest Group, and
the American College of Medical Genetics, can only
recommend treatments and therapies for
individuals with Down syndrome that have
undergone thorough scientific study. This includes
large, randomized, double-blind research studies that
evaluate the safety and efficacy of the treatment in
Continued from page 10
question. These organizations are not discouraging
parents from making decisions they feel are right
for their child. However, they feel that benefits,
risks, and side effects must be clearly shown
before they can recommend any of the treatments
in good conscience. The difficulty is that good
research studies take time and money. NDSS has
encouraged the National Institute of Child Health
and Human Development to consider this type of
research. The National Institutes of Health have also
created a separate division, the Office of Alternative
Medicine, to provide information on alternative
therapies to the general public and begin carefully
evaluating such treatments.
How can I sort through this information? What
facts should I consider?
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Does the person have a financial interest in the
therapy?
What is the experience of other professionals
who are familiar with the treatment?
Is the therapy expensive?
What are other families’ experiences and
opinions?
What are the risks or side effects? Most
therapies that have an effect also have a
side effect. These side effects should be
weighed against the benefits.
Does the treatment make sense for your family
in terms of time involvement and
costs?
Do both parents agree with the treatment?
Copyright © 2011 National Down Syndrome Society
In talking with your doctor or other parents, think
and ask about the following:
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The nature of the research data and large,
controlled, replicable studies to measure the true
benefits and risks.
Think about and compare the risks, benefits and
costs (if known).
Give your doctor the benefit of the doubt if
he/she is skeptical at first -- remember the
medical community has an obligation to “do no
harm” and to carefully evaluate any potential
new treatment. You should share some of the
information you have gathered and learned with
your doctor so that together you can determine
the best treatment plan.
Be familiar with the position statements on
certain treatments by the National Down
Syndrome Society and other national
organizations.
Think about negative stereotypes in our society
and why we often feel the need to “fix” the
person with Down syndrome.
Is the therapy documented to be safe and
effective?
Ask for copies of research studies that support
the therapy’s claims.
Are the claims realistic?
What is the background of the person promoting
the therapy?
What are the practitioner’s qualifications, is he/
she certified by a professional organization?
“My Great Story”
Join the National Down Syndrome
Society’s campaign to celebrate
and honor the great stories of the
400,000 Americans living with
Down syndrome. My Great Story
is a place where you can read and
share inspiring stories.
Join the My Great Story of the
Month Contest! It’s simple and
fun! Every month readers are
encouraged to vote for their favorite
story. The author of the story with
the most votes at the end of every
month will win a prize valued at $50
or more!
Find out more by visiting the web
site: http://www.ndss.org/
11
Get ready, get set, walk...for Ds!
Come one, come all to the 12th
annual Lehigh Valley Buddy Walk!
Date: September 24, 2011
Time: 2:00 - 6:00 pm
Place: Valley Preferred Cycling Center & Rodale
Fitness Park.
Bring your chairs, blankets, popup tents, cameras and smiles. Enjoy a day of
family fun activities. Go to:
http://lvbuddywalk.kintera.org and preregister your team by September 3, 2011 in
order to be guaranteed a t-shirt. You can
also pre-register by using the flyer in this
PO Box 60
6900 Hamilton Boulevard
Trexlertown, PA 18087
Phone:
Fax:
Email:
Web:
610.402.0184
610.402.0187
[email protected]
www.epdsc.net
newsletter. All mailed entries must be
received by September 3, 2011. You may
also register the day of the event.
All team members are encouraged to
help raise funds and increase awareness
about the Buddy Walk and Down
syndrome. See the fundraising tips on
the website.
Raffle donations are welcome. Email
Anne Marie at [email protected] if
you have a raffle item or basket.
The Buddy Walk is the biggest yearly
fundraiser for the Eastern PA Down
Syndrome Center. Your donations help fund
the many services we provide for individuals
with Down syndrome and their families.