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Piedmont Down Syndrome
Support Network Newsletter
(Summer 2005)

"On a Roll"

The PDSSN is experiencing what the sports world calls the "big mo." Momentum is a wonderful thing, whether you are a politician, a stockbroker, or a small organization of parent volunteers in the Piedmont. From the successful 2005 Buddy Walk to the regular gatherings at Mothers Night Out, we seem to have hit our stride.

People like to be associated with this momentum, evidenced by the recent offer from Church and Rod who asked to sponsor a bike ride and golf tournament to raise money for us. (see advertisement). This spring the Wake Forest Disability Awareness Committee gave the $1,438 proceeds from their Meg Hudson Annual Fund Raiser to the PDSSN. When "Down Syndrome Buddy Walk" is mentioned in the non profit board meetings of the Triad, people now stop and listen.

It hasn't always been the case. It has taken five years for us to anticipate that we might see our Buddy Walk T-shirts anywhere we go. There weren't always enough gals who would or could take time to get together for a dinner. The guy gatherings were once not even a consideration. Play groups never came to fruition. We never had to worry about the size of a location for our social gatherings in the early years.

But, there are other signs of promise. Marcia Van Riper, nationally known speaker has offered to come to share with us her research on Down syndrome (September 16th). Our own Tamison Jewett, WFU Geneticist and Advisory Board Member has committed to presenting annual research updates for us. The first annual update is scheduled for January 20, 2006. (Did you know that the first "Down syndrome mouse" has now been created to use in research? Why was it so hard and what can it mean for our scientists?) Bailey Liipfert and Rebecca Smitherin have provided us the leadership in acquiring our 501c3 status. We are nearly ready to fly on our own!

Mostly, however, our momentum has come from within. The indomitable info@pdssn.com have picked up a torch lit by their predecessors. Andrea Rice has found new ways through our brochure, poster, and billboard to help us visualize and accentuate our mission and importance to the community. The PDSSN joined with three community groups to offer the monthly BEES Parenting Program to Piedmont parents of special needs children. The BASICS 9-week college prep program kicked off on June 13th. This momentum can only come from sustained enthusiasm for what we stand for and the importance of our network to future generations of families with Down syndrome. We always need volunteers. We always need more families to attend the national and regional conventions. We always need you to help find, celebrate and nurture new members.

The next Buddy Walk is 14 months away (October 7, 2006). Help us keep the momentum - come to the social on Saturday August 20th, consider running for the openings on the advisory board, join the moms and dads gatherings, get involved. Keep us "on a roll."
Bill Donohue
PDSSN Advisory Counsel Chair

BEES Parenting Program

Being a parent is the most important work we'll ever do - and sometimes it does feel more like work than like fun! Join us for these free sessions to share challenges, ideas, and learn new strategies! Programs are held the 4th Thursday of each month (Jan - Oct) 6-7:30 in the CenterPoint Board Room at 4045 University Parkway. RSVP to Liz at 896-0950 x 122 to register and request child care for young children. (A light supper will be served).

Sponsored by the PDSSN, CenterPoint, Parents Together, and Charles A. Hines & Son.

We have four sessions left for this year. If you have not been able to attend, mark your calendar for the following dates. If you have please keep coming to share both your challanges and ideas. You will be glad you did!
Speakers:
July 28th - Don Goldstein, Ph.D.
August 26th - Lisa Hauser & Caroline Steele
September 22 - Rebecca Royals
October 27th - Deborah Maddocks


PDSSN Parents Night Out
mark your calendars

Marcia Van Riper, international speaker, will present her research on Families Living with Down Syndrome on Friday, September 16 at Allegacy off Stratford Road. Many of you met Marcia at our Allegacy sock hop. PDSSN is making this program available to the public so encourage your child's teachers, service coordinators, and health care providers to attend. Dinner and socialization between 5 and 6:30 PM (from a local Deli for a small charge). Program from 6:30 to 7:30 followed by questions. RSVP to Deborah Woolard (woolard@triad.rr.com or 778-9249) if you plan to attend the program or if you want flyers. Contact Patti Varner (PVarner1@triad.rr.com) to order food.

*Infant Toddler credit is available for professionals working in the Infant Toddler Program.

CFAC Openings
Openings are available on the Consumer and Family Advocacy Counsel and need to be filled as soon as possible. This advisory board to CenterPoint Human Services is in the middle of quality assurance for people with Developmental and other disabilities. It meets bi-monthly with dinner provided.
Contact Bill Donohue at 922-0530.

Noah Drum
June 2
Jenna Boyer June 11
Jesus Sandoval June 14
Miranda Hicks June 16
Morgan Bines June 17
Nathan Bryant June 18
Kendra Severt June 25
Noah Lilly June 29
Hannah Newton July 4
Jessie Reismman July 4
Seth Noles July 5
Malencia Spring July 5
Nathaniel Barlett July 8
Jessica Wakefield July 9
Christopher Martin July 10
Imani Leak July 11
Rachael Owen July 12
Yuinlei "Hope" Chia July 16
Ashlyn Rippey July 24
Chase Smothers July 25
Marshall Britt July 27
Spencer Neill July 28
Jennifer Ferruzca Aug. 1
Annissa Davis Aug. 3
Brooke Sprinkle Aug. 3
Rachel Rushing Aug. 6
Kevin McGee Aug. 13
Haley Cardwell Aug. 14
Trisha London Aug. 15
Leah Godaire Aug. 16
Rebecca Mustin Aug. 18
Victoria Wilson Aug. 25
Dawlton Lawson Sept. 1
Sophia Smith Sept. 15
Alejandra Chavez Sept. 19
Evan Jeffries Sept. 19
Julio Chevez Sept. 25
Stephen Reeves Sept. 26

Congratulations to Bill Donohue the new Executive Director of The Special Children's School.

Sleep Apnea

Obstructive Sleep Apnea (OSA) is a disorder characterized by repetitive partial or complete collapse of the upper airway during sleep. The causes can be structural, functional, or a combination of the two. Some of the symptoms of sleep apnea syndrome are excessive sleepiness, noisy breathing or snoring during sleep, irregular body positions in sleep, apneic episodes (breathing pauses), choking or gasping in sleep, tiredness upon awaking, and daytime mouth breathing.

Children and adults who have Down syndrome are at increased risk for OSA with some estimates as high as 65% with severe problems in over 15%. A small airway, short palate length, small mandible, and low muscle tone may contribute to the syndrome. Sleep disorders can contribute to decreased oxygenation of the blood, hyperactivity, poor school performance, and cardiovascular disease.

A sleep study (polysomnography) is used to diagnose sleep apnea. This is an overnight study performed in a sleep study lab located in a clinic or hospital. Studies have shown that parent report is not a reliable screen to identify children who have sleep apnea. Because of the high incidence of sleep apnea in children with Down syndrome some ENT's recommend OSAS testing between the ages of 3 ½ and 4 years of age for all children with Down syndrome. This is presently not a recommendation of the Down Syndrome Medical Interest Group. Occasionally a Cine MRI will be required. This procedure takes sequential airway photos during sleep and is available only at a few sites.

Treatments include continuous positive airway pressure (CPAP) and surgical procedures. CPAP is administered by mask during sleep and keeps the airway from collapsing. The most common surgical procedure to correct OSA is adenoidectomy. Children who have adenoidectomy have an increased incidence of regrowth if the procedure is performed before age two years. As many as 40 to 50% of children have resolution of symptoms following tonsillectomy and adenoidectomy. Other surgical procedures include radiofrequency reduction to the base of the tongue and genioglossus advancement.

If your child has symptoms of sleep apnea consult your pediatrician or ENT.
Deborah Woolard

The PDSSN Annual meeting & Down Syndrome Update
January 20, 2006

Dr. Tamison Jewett, geneticist & PDSSN Advisory Counsel Member, will present the first Annual Down Syndrome Update at the WFU Medical Center. PDSSN parents & interested community members are welcome to attend this interesting program so mark your calendars. The PDSSN Annual meeting will take place immediately following Dr. Jewett's presentation.

All officers and all Board members will be elected at this meeting. Members presently holding these positions can be re-elected but we will have an official election for ALL positions as we begin our Corporation as a 501c 3.

If you are interested in running for an office or have questions, please notify Sherry Jeffries. If you are interested in serving on the Board of Directors or have questions, notify Bill Donohue. Please notify them if you are presently serving and want to continue or if you are not holding an office but are interested in doing so your name can be placed on the ballot.

Remember you must be a registered member to vote or serve as an officer or board member. Dues can be paid at the annual meeting ($10) for those that are renewing and can be paid now ($5) for those wishing to join. If you have questions about your membership status you may contact Kristen Faulkner, who is responsible for membership.

Second Chance Golf Tournament and Benefit Ride Fund Raiser - July 30, 2005.

Net proceeds of both events go to the PDSSN & Second Chance Boys Ranch. Please plan to support this fund raiser.

Call Chuck at 336-399-5401 for more information about the golf tournament or Bill Donohue to sign up for the PDSSN golf team. Call Rod at 336-643-7203 for more information about the motorcycle ride. Call Deborah Woolard for volunteer assignments.

A party will take place at County Line at 3:30 PM.
We need families to participate to show our thanks for their efforts on our behalf.

If you would like a paper copy of the newsletter mailed to your home, please email Helen at pbcoffice@alltel.net. We will be sending the newsletter via email unless we hear from you! If you know of others who want to receive the newsletter they can sign-up on the website www.pdssn.com

PDSSN Summer Family Gathering
Town & Country Pool (off Reynolda)

Saturday, August 20th at 4 PM
RSVP to Wayne Kennedy at swimmerfamily@yahoo.com or 923-2835
Pizza will be served

(The pool is big enough for everyone!)
Pavilion, basketball, and tennis are also available

(Directions: Off Reynolda Road turn into Town & Country on Briarcliffe Rd. Go ½ mile and turn left on Kingston Rd. Pool is immediately on left.)


Thanks to the Wake Forest University Disability Awareness Committee for donating the $1438 proceeds of their Meg Hudson Memorial Fund raiser to the PDSSN.
BASICS "Beyond Academics Summer Introduction to College Sessions"

BASICS is a 9 week College Prep Program that is being held this summer at Winston-Salem State University. This program is designed for young adults with developmental disabilities who are interested in exploring a post-secondary residential program: Beyond Academics. The focus of the program is to enhance daily living, social, residential, and leadership skills while living on a college or university campus. This summer program offers student activities for skill development as well as the opportunity to experience life on a college campus to assist them in making a decision about enrollment into the two year program scheduled to begin Fall 2006.


PDSSN Newsletter
Helen Johnson, editor
PO Box 91
Pfafftown, NC 27040



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