The Piedmont Down Syndrome Support Network (PDSSN) was founded in 1987 to provide support and advocacy for individuals with Down syndrome. Their mission is to ensure individuals with Down syndrome can pursue fulfilling lives and are valued members of the community. PDSSN offers various programs and events for families, including social gatherings, support groups, educational programs and scholarships. They work to raise awareness and advocate for inclusion. Major events include an annual Buddy Walk and fundraising dinner.
2. Piedmont Down Syndrome Support Network’s Mission
•
Ensure individuals with Down
syndrome in the Piedmont area are
valued, included, and given the
opportunities to pursue fulfilling lives
•
Provide information, networking
opportunities, and advocacy for
individuals with Down syndrome and
their families, educators, health care
professionals, and the community at
large
3. PDSSN’s History
Founded in 1987
Has grown and increased services
to others over the past 13 years
Became a 501(c)(3) nonprofit
organization in 2005
While the main advocacy remains
on Down syndrome, welcomes
other special needs groups to
many activities
4. PDSSN Organization
In 2012, awarded a grant from the Winston-Salem Foundation and hired
a part-time executive director
Affiliations: National Down Syndrome Congress; National Down
Syndrome Society; Down Syndrome Affiliates in Action; and HandsOn
Northwest North Carolina
www.pdssn.org highlights our mission, programs, events calendar,
information about Down syndrome, resources and more.
5. PDSSN Representation on Community Committees
CenterPoint’s Consumer & Family Advisory Committee
CenterPoint’s IDD Advisory Committee
Forsyth County Special Needs Planning Committee
Family Support Network’s Local Collaboration Team
Disability Rights North Carolina Board
Keynote Presentation at the NC ARC State Conference
Disability Advocates
DHHS and the Medicaid Reform Advisory Group
6. Programs for Families Who Have
Children with Down Syndrome
Family Social Gatherings
D.A.D.S. Group
Ladies Night Out
PDSSN Member Scholarships
Sunshine Fund
New Parent Resource Notebook
Pre and Post Natal Program
Triad First in Family Funds
Seasonal Newsletters
7. Family Social Gatherings
Regular gatherings include:
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Dine Out - PDSSN family
nights at area restaurants
•
Winter family social
•
Summer family picnic
•
Spring KIDS FEST
8. Dine Out for Down Syndrome
Meets monthly at a different
restaurants in the area
Provides opportunities to raise
awareness in our community
while enjoying fun meals out with
PDSSN families and friends
Raises funds to support PDSSN
events throughout the year
Outings are listed on PDSSN’s
event calendar on our website
PDSSN sends out emails each
month with information about the
location
9. LNO – Ladies Night Out
A casual night out to catch up
with friends and enjoy the
support of other moms
Meets monthly at different
restaurants in the area
Outings are listed on PDSSN’s
event calendar on our website
and emails are sent out monthly
with the dates and locations
10. D.A.D.S. – Piedmont Chapter
Simple Mission:
Simple Goals:
“To assist and support, through fellowship and action, the fathers and
families of individuals with Down syndrome”
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•
•
•
Information:
:
•
•
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To create a network of fathers willing to develop a program based on the needs
of the men involved
To enhance a father’s knowledge and resources about children and individuals
with Down syndrome
To enhance personal advocacy skills
To improve a family’s ability to cope with the unique challenges of raising a child
with Down syndrome
To provide a safe atmosphere of support where men can openly share
To have fun and build camaraderie and friendships among fathers
Open Forum and Info: https://www.facebook.com/DADS.Piedmont
• Closed discussion group on Facebook
• PDSSN Site: http://pdssn.org/programs-3/d-a-d-s/
Support
Fellowship
Action
The Foundation
11. PDSSN Member Scholarships
PDSSN members can apply for funding to attend national and local
Down syndrome related conferences.
Scholarship awards based on past years involvement with the PDSSN.
12. Sunshine Fund
Support for families who are
experiencing illness,
hospitalization, or other
hardship by offering visits and
gift cards.
Electronic care calendar that
allows members to sign up to
help with other families’ needs
for meals, rides, etc. during
times of hardship.
13. PDSSN New Parent Resource Notebook
Provides comprehensive
information for ages birth
through adulthood
Lists IDD related resources for
the surrounding six counties
Available in both English and
Spanish
Resources also available
online at www.pdssn.org
14. Pre & Post Natal Program
Available to any family whose child is diagnosed with Down
syndrome before or after birth
Provides up-to-date accurate written information as well as a
trained volunteer
15. Triad First in Family Funds
First In Families of North Carolina - Believe, Achieve, Give Back.
TFIF offers support to families and individuals in Forsyth, Davie & Stokes
Counties by connecting them to community programs, obtaining discounts, and in
some cases providing funds.
PDSSN provides funds annually to TFIF for individuals who have Down
syndrome and their families in the 3 counties TFIF covers plus Surry, Yadkin, and
Davidson. Distribution of funds is determined by the TFIF management team.
Eligibility Requirements:
Triad First In Families supports any family in which one
family member has a developmental disability or
traumatic brain injury.
The family/individual must be living in their own rented
or owned home, not in a group home.
Total household income cannot exceed $65,000 per
year.
16. PDSSN Programs Open to the Community
Exceptional Families Program
Next Chapter Book Clubs
No Limits II Dance
Community Education Programs
Annual Down Syndrome Update
Community Grants
17. Exceptional Families Program
Partnership with Family Support Network
Meets 10 times a year on the 4th Thursday
of the month from 5:30pm to 7:00pm at the
Little Creek Recreation Center
Guest facilitators support discussions
regarding topics of interest to parents of
children who have intellectual and
developmental disabilities
A light supper and childcare are available
but reservations for both are required
Professionals are welcome and Infant
Toddler Credit is available
18. Next Chapter Book Club
Promotes literacy and encourages
friendships among adolescents and adults
with intellectual disabilities
Members meet for one hour a week at local
bookstores, coffee shops and cafés to read
and discuss a book of their choosing
Anyone can participate, no matter their
reading or ability level
Two trained volunteers facilitate each group
Currently 4 adult clubs in Forsyth County
Will expand to other counties when enough
people show interest
19. No Limits II Dance Club
A fun evening out for adults with
disabilities (18 years and older)
Dance, play Bingo, ride in a limo, enjoy
refreshments and door prizes
Dates in 2014: 2/21; 5/2; and 9/12
20. Community Education Programs
PDSSN Community Education
Programs are open to everyone.
Our speakers have included:
speech language pathologists;
occupational therapists; ear, nose
and throat doctors; special needs
trusts attorneys; estate planning
professionals; and others.
PDSSN hosts an annual Down
Syndrome update meeting every
January, at which Dr. Tamison
Jewett presents the most current
medical information available about
Down syndrome.
21. Community Grants
PDSSN makes donations to
groups that support people who
have Down syndrome or other
intellectual disabilities.
Some recipients: Triad First in
Families, Beyond Academics,
The Special Children’s School,
No Limits II Dance Club, Friday
Socialites, and the Family
Support Network.
22. Dress Down for World Down Syndrome Day
March 21, 2014 marks the 9th
anniversary of World Down
Syndrome Day. This day was
chosen to symbolize the third copy
of chromosome 21 in Trisomy 21,
the most common form of Down
syndrome.
Last year, PDSSN celebrated
individuals with Down syndrome in
our community with our first Dress
Down for Down Syndrome day.
Please join us this year by encouraging companies and
organizations to help promote the acceptance and inclusion of
individuals with Down syndrome by “Dressing Down” on March
21st. We’ll be sending out more information by email soon.
23. The PDSSN Buddy Walk
Usually held in October
which is Down Syndrome
Awareness Month
Promotes awareness,
acceptance and inclusion
of individuals with Down
syndrome.
Fun for all includes: food,
carnival games, music,
magic shows, inflatables,
train rides, and the famous
talent show!
24. 2013 Buddy Walk Results
Revenue
Expenses
Net
2013 Walk
$55,220
$10,633
$44,587
2012 Walk
$46,932
$10,388
$36,543
2011 Walk
$22,048
$9,255
$12,793
25. 2013 Accomplishments
Launched new website PDSSN.org
Founded D.A.D.S. Group –
Dads Appreciating Down
Syndrome
Launched Dress Down for
Down Syndrome
Implemented monthly Dine
Out for Down Syndrome event
Held Most Successful Buddy
Walk
Distributed Baby Bootie Boxes
26. 2013 Accomplishments Continued
Received Prevention,
Outreach, and Wellness
Programs of Excellence Award
from NC Council of
Community Programs for the
Next Chapter Book Club
Selected by Leadership
Winston Salem Action
Learning Team for Board
Development Project
Increased Community
Awareness – magazine
articles and PepsiCo donation
27. 2014 Initiatives
Down syndrome awareness video
Support for Spanish speaking
families
Leadership Winston-Salem
Action Learning Board
Development Project
Increase number and variety of
social and educational gatherings
Build and expand partnerships
with community organizations
Add No Limits II Dances to
PDSSN’s programs
28. PDSSN Member Benefits
Support, social, and educational
opportunities
Input and voting privileges
regarding PDSSN issues
Information on Down syndrome,
resources, and advocacy
Parent resource notebooks
Support if a family member is
hospitalized
Scholarship funds to attend local
and national conferences
Opportunities to be involved and
make a difference!
Can discuss and elaborate on meetings, speakers, and events as we talk about simple goals.Speakers – Estate planning, challenger league, beyond academics, medical needs, et.Events – Poker night (fund raiser), sporting event