EPDSC'S COMING EVENTS
Date: Saturday, June 23
Time: Noon to 3:00
Place: Breinigsville Community Park
Families A-L, please bring a salad; M-Z please bring a dessert.
RSVP's required - call 610-402-0184 by June 15.
EPDSC'S PAST EVENTS
COMEDY NIGHT
Proceeds Benefit the Eastern PA Down Syndrome Center
Date: Friday, May 18th
Time: 8:00 pm, doors open @ 7:00pm
Place: The Marian Inn
Our Lady Of Perpetual Help Church
3221 Santee Rd.
Bethlehem, PA
Ticket Price: $25.00
(Tickets purchased the March 16th program will be honored for the May 18th show)
~ Hors D’oevres ~
Must be at least 21 yrs. to attend!
For Tickets and Information,
Call Julie Dody
(610) 252-2384
or
(610) 509-3505
“ Preparing for the Future”
I can barely stay on top of today! And you want me to think about the future?”
The time to start planning for your child’s future is yesterday, regardless of how old your child is. Preparing for your child with Down syndrome is more difficult than preparing for the future of children without a disability. We, as parents, do not have the “luxury” of waiting until they’re older,
more mature, when our schools begin the process or agencies we are involved with tell us it is time to start investigating options. As parents, we have a much more vested interest in seeing our children prepared for adulthood and independent living. Now is the time to begin.
Looking five, ten or twenty years down the road can be a daunting task. But it is a task that is incredibly necessary. On April 28, EPDSC will sponsor a workshop which will focus on helping parents and professionals better prepare for the future. We have arranged for two individuals, both well versed in their respective fields, to help us lay the foundation, or build on one if you’ve already started the process.
Jonathan R. Pletcher, MD, Pediatric Subspecialist in Adolescent Medicine, attended Medical School at the University of Pittsburgh and completed his residency at The Children’s Hospital of Philadelphia. At CHOP, Dr. Pletcher was very active in issues related to adolescents and received numerous awards in support of his work. Dr. Pletcher has recently joined Lehigh Valley Hospital, where he continues his work in adolescent medicine and “Transition Planning” for individuals with cognitive delays. We are very fortunate to have him in the Lehigh Valley.
Ira M. Fingles has devoted his legal career to the representation of individuals with disabilities and their families. His motivation to enter this field stemmed from his experiences with his sister, who has multiple disabilities. He has provided legal representation to individuals with disabilities in a variety of areas, including educational rights for children with disabilities, benefits and services for adults with disabilities, guardianship, and estate planning.
Ira is Immediate Past President of the Autism Society of America, Greater Philadelphia Chapter and serves as a director and advisor to several other disability advocacy groups in Pennsylvania and New Jersey. He received his J.D. degree from Temple University School of Law in 1992 and is a member of the Pennsylvania, New Jersey, and Florida Bar.
As part of preparing for the future, Mr. Fingles will speak about the variety of legal issues that arise as children approach adulthood, including: eligibility for adult benefits and services, providing financial protection through Special Needs Trusts, surrogate decision making through guardianship and powers of attorney, and many other topics.
To open the morning workshop, Cathy Reilly, and her mother, Nola, and sister, Molly, will speak on Cathy’s experiences as a young woman with Down syndrome, living and working in her community. Cathy is a motivational speaker, published poet, classroom aide, kickboxer and eucharistic minister. Cathy will demonstrate that those with disabilities have the ability to live full and independent lives. This is a very powerful family presentation.
More information on Cathy Reilly’s presentation will be available on the program distributed the day of the workshop. The Reilly family spoke at our conference several years ago. The presentation was very inspiring and insightful. This family has information to share from individual, parental, and sibling perspectives. Please plan on attending “Preparing for the Future”.
Holiday Brunch
The Brunch will begin at 9:30am and end around 12:00pm. Santa will be there too! Families are asked to bring a small gift ($5.00 in value) for their child(ren) if they would like to have that gift presented by Santa
Buddy Walk 2006
On September 23, 2006,
you have the opportunity to join hundreds of other people and
show your love and support for your child/family member/friend with Down
syndrome. The Eastern PA Down Syndrome Center will host its annual Buddy Walk 2006 at DeSales University, 2755 Station Avenue,
Center Valley, PA. Registration will be from 2:30 PM to 3:30 PM on the
Library steps at The Commons on DeSales’ beautiful campus. Families can
park in either the Labuda or the
Library lots. “Warm-Up” will take place
from 3:30 PM-3:45 PM. And then the mile-long Buddy Walk begins.
Activities for children and adults alike will be available from 3:00 PM
to 7:00 PM. This year, two lives bands, games and other fun activities,
vendors and a catered dinner (which will be served at 5:00 PM—cost is
included in registration fee) will entertain and keep people hopping.
You’ll meet up with old fiends, see how the “kids have grown”, swap
words of wisdom and make new friends. But as fun and significant as
that is, the fact that you’ll be helping to educate the public about
Down syndrome is equally important!
A Bit of History
The Buddy Walk was established by the National Down Syndrome Society in 1995 to celebrate Down Syndrome Awareness Month in October and has three primary goals:
Your attending the Buddy walk and
fundraising not only help to support the activities of the Eastern PA
Down Syndrome Center, but also help fund the research that occurs on
local, regional and national levels. The programs we provide at the
Eastern PA Down Syndrome Center make a real difference in the lives of
the families we see. And we are very proud of that—from our Library to
our Down Syndrome Clinic, DS News and website, our annual
conference and workshops, phone consultations and sending information
packets to parents and family members, helping to educate medical
students and other professionals and networking with other Down syndrome
experts to stay abreast of the most current information available for
our members. But we need your help to keep it going!
Over the last
eleven years, the Buddy Walk has become the premier advocacy event for
individuals with Down syndrome and has become a major platform for
inclusion in communities across the country. Be a part of the Buddy
Walk and the benefits you’ll bring to your family member or friend with
Down syndrome. Join us on September 23rd at DeSales
University
The Staff and Volunteers of the Eastern PA Down Syndrome Center
"Home, Health & Future VI"
Holiday Inn and Conference
Center
Fogelsville, PA
Our annual “Home, Health and Future”
conference had a special magic to it this year. Carrie Bergeron and
Sujeet Desai brought their talents, wit and charms; and shared them with
all who attended. Carrie’s Mom, Peggy, and Sindor, Sujeet’s Mom,
were also part of the Key note presentation. The self-advocates
discussed both their educational backgrounds and social experiences,
challenges and accomplishments. And then Carrie and Sujeet took the talk
to a more personal level; their engagement and plans for the future.
Peggy Bergeron and Sindor Desai spoke
of how they dreamed of having their children with Down syndrome happy
and “accomplished” and how they hoped for a loving relationships in
their futures. And obviously, dreams do come true! But dreams also
require some work. Peggy explained some of the individuals and support
systems involved in helping both of the families assist Carrie and
Sujeet to prepare for their married life. The planning is extensive, but
as the mothers talked about “breaking new ground”; they realized the
“first time” is usually difficult for people with Down
syndrome-whether it’s an inclusive school, graduating from college,
obtaining gainful employment or getting married. But the “Moms” are
willing to help other families that may be tackling the same issues. And
I am sure there are many of us who wish we will be!
Sessions given by Cindy Molloy,
M.D. and Mary Pipan, M.D. were heavily attended.
Parents have repeatedly expressed concerns about their children’s
behaviors and were glad to have the opportunity to be educated and have
their questions answered. Natalie Hale, the reading specialist and
author, had a lot of wonderful suggestions and insights into helping our
children to read. Trudy Fulmer’s session on IEP’s gave a lot of
helpful ideas on how to better include students with Down syndrome into
regular education classrooms, to better organize information and the
philosophy and reasons behind inclusion. Anita Ellsberry’s discussion
on “Teen Tasks” was very helpful for parents who have pre-teen or
teenage children. Anita had the audience participate in some hands-on
activities to demonstrate how some of our children may receive sensory
input. The information given in this session will help to better prepare
individuals with Ds for a more independent life.
The self-advocates were very busy
attending Keynote sessions with the general conference attendees and
then sessions of their own. The self-advocates also had the pleasure of
hearing Sujeet play various instruments during lunch.
After the conference had ended, many
of the self-advocates “hung-out”, chatted and took pictures with
Carrie and Sujeet. “It’s like they’ve been friends forever”, commented
one mother in the audience. Everyone seemed so relaxed
and willing to talk and discuss their sessions, especially the one on
Karate! Quite a few of the self-advocates were sure they had learned a
few of the basic “chops” and kicks! It was obvious they had a good
time. Click here for photos
2005 Buddy Walk
All of the nearly 400
people who attended this year’s Buddy Walk enjoyed the most beautiful
weather and the best company the day had to offer. Family members and
friends joined together to have a wonderful time and increase public
awareness concerning issues related to Down syndrome.
Once again, Susan
Ottolini and her committee members; Lilyan Frisch, Julie Minnix, Chris
Farrell, Sue McGorry, Shelley Turner, Kim Wallace, Kate Touzeau, Maria
Floryshak, Mandie Vernitsky, Kathy Woomer and Patti Mertz, did a
phenomenal job planning a day that was full of activities and fun.
This year, the Buddy
Walk was begun with a special poem read in honor of Donna Gallagher, a
very dear friend and volunteer of the Center who recently passed on.
After a moment of silence was dedicated to Donna’s memory, Keith Frisch
welcomed everyone to the Buddy Walk. Keith announced the schedule for
the day, and introduced Dr. Larry Ninesling, who warmed-up the crowd
to “The Chicken Dance” and The “Hokey Pokey”— 2 tunes that are always
great for loosening up a crowd!!! Our DJ, Joel Kowalski, spun tunes
that had folks tapping their toes and moving throughout the day . The
performances by MunOpCo’s “Music in Motion” and the “Allstarz”, were a
big hit, as always! And let’s not forget Johnny Mertz, who relentlessly
drove around Macungie Park ALL day giving hay rides to just about
everyone who attended the Buddy Walk!
Though the day was
filled with entertainment and fun, the goal of the Buddy Walk was to
increase public awareness about Down syndrome; and we believe our
mission was accomplished! But nothing is as special as all of the
“walkers” getting together to celebrate their friends and family members
with Down
syndrome, young and
old. A very special Thank You to Sue Ottolini,
Administrative Coordinator Extraordinaire who has taken our
Buddy Walk from it’s “infancy stage” right into “adulthood’!
Pictures BW 2005
2004 Buddy Walk
It could not have been a more perfect day; sunny, warm, a
light breeze and over 370 registered 'walkers' joining together at
Macungie Memorial Park to honor their families and friends! In
addition to the wonderful weather, members of our communities came out
to help us celebrate the day. With the support of The Health
Center at Trexlertown and Forester's as our Platinum Sponsors, the
Eastern PA Down Syndrome Center was able to provide fun activities,
music and entertainment throughout the day. A record $21,000 was
raised by families and friends to help continue the work and support
done at the Center.
Longaberger® BASKET BINGO FUNDRAISER
Friday, March 24th at 7:00 PM
(doors open at 6:00 PM)
The Meadows Banquet Hall in
Hellertown
Tickets $20. Specials, door prizes, and Chinese
auction throughout the evening. All baskets are filled.
Call Julie at 610-252-2384 for tickets.
EPDSC'S Fifth
Annual Conference
on Down Syndrome
"Home, Health and Future V"
and
"Self-Advocate Conference"
are Overwhelming Successes
Nearly 200 people attended our
fifth annual conference, "Home, Health & Future V", on Saturday, April 2nd
at the Holiday Inn in Fogelsville. Karen Gaffney delivered an
outstanding presentation to the parents and professionals seated in the
audience. Karen's message was clear--we have a job to do.
Creating inclusive communities for our children, students or clients with
Down syndrome benefits everyone. And homes, schools, religious
communities and organizations such as the Eastern PA Down Syndrome Center,
all have a part in creating those environments.
After her oral presentation, Karen shared the
video that was made during her swim In the English Channel. Karen's
experience, and the experiences of the other team members, emphasized the
importance of being "a part" of something greater than ourselves. Many
of the attendees were deeply moved by the comments and thoughts the team
shared on the video. It was truly and inspirational start of the
conference.
In another section of the Holiday Inn, the
"Self-Advocate Conference" was moving right along. The self-advocates,
and their volunteers and presenters, had their own agenda and activities.
"Never a dull moment!"
Sessions on Health, Cooking and Horticultural
Therapy kept the participants involved active and excited about the
information they were learning. The volunteers also enjoyed the
sessions and wee able to be a great support for the self-advocates. "I
could have left after my session was over, but I decided to stay!. I
was learning more than the self-advocates were."
According to the surveys the self-advocates
were asked to fill in, they enjoyed the sessions and are planning on
returning next year. "The feedback we received will help us to plan
the Self-Advocate conference for next year. I was impressed by the
suggestions the groups made.", commented Maria Floryshak, conference
chairperson. We hope to have more spaces available next year.
Longaberger®BASKET BINGO
FUNDRAISER
For The Eastern PA
Down syndrome Center
Friday, March 11, 2005 at 7:00 PM
A basket full of "Thanks" is extended to
Julie Dody and the Basket Bingo Committee. Once again, the Center has
benefited from another enjoyable fundraiser! Everyone who attended had a
great time and a lot of wonderful baskets and prizes were won. We’re
looking forward to 2006 with a change of location and a few surprises.
We are all very grateful for the committee’s hard work and dedication to
the EPDSC!
EPDSC
Annual Family Picnic
Saturday, July 16, 2005
EPDSC's First Annual
Picnic at Breiningsville Park. Festivities started at 12:00 PM.
Families brought side dishes and desserts.
[click for 2004
Conference pictures]
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