PLATTSBURGH, N.Y.- “From
the outside our families are all so positive but behind the scenes there are
many heartaches and struggles. Even with these any family will tell you that
they would not trade it for anything” said Co-founder Tracy Rotz of the former
North Country Down Syndrome Association.
The NCDSA was the only
formal support, and fundraising, group specifically for families with members
who have Down syndrome. Cindy and Tracy Rotz started NCDSA in 1998 and led the
Plattsburgh chapter for 15 years. They stepped down in the spring of 2013 to
spend more time with their family.
They have not been able
to find anyone else to take over the association leadership. Because of this
the Facebook page is now outdated with the last post being made in May 2013.
None of the other jobs of a Down syndrome association president have occurred
either. According to the past president Cindy Rotz the job included, “Setting
up all fund raisers, public speaking events to raise awareness of Down syndrome
in our area, help other parents with new children with Down syndrome, match
families up with similar situations, buy books and other materials for schools,
doctors and families, established relationship with area teams and groups to
help promote friendships and raise awareness, we also supported financial needs
for medical care outside our area.”
According to Cindy were
more than 20 families who participated in the annual events such as the Buddy
Walk held every fall.
One of these families
was the Thomson’s. Jane Thomson, mother of Matthew Thomson said, “We
participated in the Buddy Walks as a family, and helped at the event when able.
The organization hosted parties and other events that we also attended. Our
favorite activity was when Matthew modeled for the annual calendar. We supported
the group financially with Buddy Walk pledges and calendar sales. As older
parents, we often shared our experiences with other families.”
Jane said, “NCDSA
brought awareness and understanding of Down Syndrome to the local community.
Public events and press contacts educated the public and lifted some of
the stigma that had followed Matthew. The organization helped Matthew to
feel that he was part of a group. He was made to feel that he was a role
model, or in his words, a “rock star”. The group helped us to network
with younger families who were new to dealing with Down syndrome. As
older parents, we often shared our experiences with other families.”
Jane’s husband Mark
adds, “We looked forward to the annual Buddy Walk, the signature event of the
NCDSA. My office sponsored the event for a number of years. Our family gave
calendars as gifts, this became very popular and eagerly anticipated.”
When asked about no
longer participating in the Buddy Walk, Cindy and Tracy’s son Brett said, “I
miss selling my papers, I color pictures (from coloring books) and sell them.”
Restarting an official
organization may not happen. Jane said, “It would be wonderful, but is
unlikely. I sat on a steering committee that looked to recruit new leadership
soon after the NCDSA disbanded. It was unsuccessful.”
“I would love to have
someone take over; we still have a small amount in the bank. I miss seeing the
kids and families. I also think the members miss the activities. I have always
said that we are here and will help in any way possible.” said Cindy. “The
reason for us stopping has to do with Brett being older and we need to focus on
what path and opportunities we can make for him now.”
Tracy added, “It is a
tremendous amount of work but one of the most rewarding endeavors you will ever
do.”
The open plea to
community members for organization leadership is still on top of the North
Country Down Syndrome Association’s Facebook page. “The
opportunity is now here for someone else to step in and organize the Buddy
Walk. If you or someone you know might be interested, please let us know either
on Facebook, or by emailing us at NCdownsyndrome@gmail.com.”
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