HeartStrings

GR ADSA
A bi-monthly publica tion for families and friends enriche d with the Down syndrome connection.

Wo r ds fr o m o ur Ex e c ut iv e Dir e ct o r

Se pte mbe r/Octobe r 2009

Congratulations to April and Shawn Smith. April (GRADSA’s current President) is pregnant. Due to the pregnancy, April will be taking a hiatus from her duties here at GRADSA. We wish her well, and offer April, Shawn, Darian and Ethan a huge GOOD LUCK!!! ----------------------------------GRADSA families celeb rated the end of summer at the annual Pool Party, held on July 31, 2009. Over 80 people came out and enjoyed the food, water and fellowship. -----------------------------------Sibling Saturdays is off to a great start. Siblings of all ages have enjoyed playing golf, bowling, eating pizza and just socializing with other children who have a sibling with Down syndrome. Look for future events and join us!!!

GRADSA is experiencing a baby boom! We have welcomed four new families into GRADSA within the past few months. As a result, we are exp anding our new parent outreach program to include these new families. The Parent Outreach committee is working on a social event fo r parents o f children ages birth to 5. It is our hope that our “seasoned” parents can reach out, and offer support and guidance to our newest members. Be on the lookout for the details of this fun event in the next few months! -----------------------------------GRADSA would like to offer parents and educators the opportunity to come together on a regular basis and discuss IEP goals, strategies, problem areas and more. This group would be modeled

after Wright’s Law’s Educational Advocacy Groups and would use the text from Wright’s Law entitled From Emotions to Advocacy. We are looking fo r 2-3 dedicated volunteers to help mediate the discussions and help interpret the text. If you are interested in joining GRADSA in this outreach, contact Anji Edge at 270-281-0093 or info@g radsa.org. ----------------------------------GRADSA still has a few Kroger Gi ft Cards left fo r sale. If you would like to join GRADSA in raising funds ev ery time you shop at Kroger, contact Anji Edge at 270-281-0093 or info@g radsa.org

BUDDY WALK ‘09
This year’s Buddy Walk will be held on Saturday October 10 at Moreland Park in Owensboro. 11 am to 1 pm We are using FirstGiving again this year to help our families raise funds. See www.fi rstgiving. com to set up your child’s page today!!

GRADSA Calendar of Events
Friday Se ptembe r 18, 2009 PIE AUCTIO N
The auction will be held at the Daviess County Fairgrounds on Highway 54 in Philpot.

Saturday Se ptembe r 26, 2009
Annual Holiday World Outing GRADSA will pay for tickets for the person with Down syndrome and immediate family members living in the home. This year GRADSA will NOT be providing lunch, however we will all meet in the shelter area at 1:00 pm. You are welcome to bring coolers with your lunch, or purchas e your lunch inside the park and bring it to the shelter. Splashin’ Safari will not be open on this date. The park hours are

9:30 am to 5:30 pm on this day. ALL tickets must be preord ered. No ticket sales will be available the day of the event. Tickets are available for $24.45 for friends, and other family members. These must be prepaid. RSVP to Anji Edge at 270281-0093 or info@g radsa.org no later than Thursday September 10th if you plan to attend.

The Lions Clubs of Daviess County are teaming up and hosting a chili supper/pie auction Dinner is served at 5:00 pm. to benefit GRADSA. All The auction begins at 6:00 pm. proceeds from this night will go directly to GRADSA. We need Bring the kids, grandparents, YOUR help! friends and neighbors! We need: Volunteers to help at the auction The meal will consist of chili, Cakes, pies, desserts to be donated hotdogs and drinks ($3 per fo r the auction person). Tell your friends and family to come out and enjoy an evening of This event will be held in the food and fun! main building at the Fairgrounds, so rain or shine, we’ll see you there!! 1

GRADSA NEWS
GRADSA is participating in a recy cling program fo r ink jet/laser jet cartridges. For every cartridge we submit, we receive a cash award toward our purchas es at Staples. This year alone, our ink jet fund has paid for mailings, copying fees and more. Please, join us in our efforts! You can bring your cartridg es to any GRADSA event. We need a minimum of TEN cartridg es per month, but we also have room to store extra cartridg es fo r futu re months. Thank you for supporting GRADSA in this way! GRADSA’s Parent Outreach Committee is working hard to schedule upcoming meetings and events that will address the needs o f all of our members. Several GRADSA families had the opportunity to hear Linda Beckman, sister and caregiver o f an adult with DS, speak on the need for improved housing options fo r the adult with DS. Several needs were identified through this presentation and GRADSA is working hard to help meet those needs. Look for in formation in upcoming months on presentations that deal with waiver servi ces, assisted living options and more. GRADSA is anticipating kicking off a new seri es of meetings designed to meet the needs of di fferent member groups. Look for more in formation on upcoming, monthly events. At GRADSA, we strive to meet the needs of our member families across the lifesp an. If you have ideas or suggestions for meetings, please contact any board member, or Anji Edge at 270-281-0093 or info@g radsa.org We look forward to meeting on a monthly basis and welcome the opportunity to get to know each of you.

Member Assistance Program

GRADSA would like to offer the opportunity for our member families to reach out and help one another. Supporting others, receiving support and the friendships that GRADSA has helped form is one of the greatest benefits o f membership in GRADSA. Through this program, we are o ffering you the opportunity to ask questions pertinent to your child, and receive help and advice from experienced parents. The way the program will work is: Submit your question or need to Anji Edge at info@grads a.org or 270-281-0093 In each edition of HeartStrings you will see the list of questions and needs If you have advice to offer, suggestions or recommendations fo r a need listed, contact Anji Edge and she will put you in contact with the family who submitted the question/need Advice and suggestions will also be published in HeartStrings, for the benefit o f all members Some other ideas for this program include requests fo r finding aft er school care, used clothing or toy exchange and anything else that our families would find helpful Again, contact Anji Edge at info@gradsa.org or 270-281-0093 with your questions, needs or suggestions and advice.

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Fazoli’s B irthday Club - Fazoli’ s, 5060 Frederica Street, is treating individuals with Down syndrome to a free meal to celebrate their birthday. Children ages 12 & under can choose a kids meal while teens & adults have their choice of a small spaghetti with marinara or meat sauce. To receive your free meal, show this column to the cashier during the month of your birthday.

Trevor Brown Kenneth Douglas Kelsey Dueker David Fogle Lilly Gray M itchell Hensley Ruby Hidalgo Denise Howard Tatum Parker Raven Paulson Isaac David Ramsey Jeff Rhinerson Paige Roberts Eli Rose Alyssa Toerne Kaleb Warman

9/27/89 10/28/08 9/11/93 9/10/70 10/19/01 9/4/01 9/20/06 9/23/61 9/1/99 9/13/96 9/9/01 9/2/78 9/21/02 9/18/02 9/18/94 9/16/89

FIVE THINGS TEACHERS NEED TO KNOW

1. Please think carefully before hugging my child. Not every adult (s)he meets will be safe and friendly, and (s)he needs to learn boundaries and age-approp riate ways to interact. 2. It's okay to let my child's classmates know about Down syndrome as long as it is done in a positive way; I'd be happy to help prepare a program. 3. Teaching strategies that have proven success ful for children with Down syndrome will help my child learn better and make him/her easier fo r you to deal with. 4. My child is an individual, not a diagnosis -- please be alert and receptive to the things that make him/ her unique and special. Ask me and I’ll tell you. 5. Please keep the lines of communication open between our home and the school. My child needs all the adults in his/her life working together.

2009 UPCOMING EVENTS ----------------------------Pie Auction/Chili Dinner Friday September 18 5:00 pm Daviess County Fairgrounds Dinner = $3 per person ----------------------------HOLIDAY WORLD Saturday September 26 RSVP prior to Sept. 10 GRADSA will pay for admission for the person with DS and their immediate family members living in the same home. GRADSA will not provide lunch. Meet in the picnic shelter at 1:00 to eat with the group. ----------------------------BUDDY WALK th Saturday Oct. 10 Moreland Park Owensboro, KY ----------------------------Halloween Party Saturday October 24 3:00 pm Dream Riders (old Cowboys location) Parents, siblings and children with DS ages 12 and under ----------------------------Halloween Dan ce Saturday October 24 6:00 pm to 8:00 pm Dream Riders (old Cowboys location) Dinner will be served at 5:00 pm. Parents, siblings and children and adults with DS of any ages ----------------------------Christmas Party Date and time TBA -----------------------------

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Eight year old Isaac Ramsey, of Madisonville, is in training for the Special Olympics Equestrian Events. The event is being held in Lexington, in October. Here Is aac is working with his instructors, preparing for comp etition. GRADSA says “ GOOD LUCK ISAAC!!!!”

Six year old Luke Stone, of Owensboro, vacationed with his family this summer. Luke continues to struggle with heart and lung problems and will be undergoing testing in September. Luke’s parents ask that we remember him in our thoughts and prayers. Looks like he had a great vacation!!!

Caleb Morgan Francis was born on 6/28/09 at 35 weeks. Caleb weighed in at 5 lbs. 5 oz. and was 19 inches long. Proud parents are Arnetta and Francis. Welcome Francis family!!

Web address: http://www.sciencedaily.com/releases/2009/08/ 090815100837.htm

Obstructive Sleep A pnea Is Prevalent In A dults With Down Syndrome
ScienceDaily (Aug. 17, 2009) — A study in the Aug. 15 issue of the Journal of Clinical Sleep Medicine shows that adults with Down syndrome also frequently suffer from obstructive sleep apnea (OSA). Howev er, complications of untreat ed OSA such as cardiovas cular diseas e, daytime sleepiness and impaired cognitive functioning overlap with the manifestations of Down syndro me; therefo re, OSA may not be detected. Results indicate that 94 percent of subjects with Down syndrome had OSA; 88 percent had at least moderate OSA with an apneahypopnea index (AHI) of more than 15 breathing pauses per hour o f sleep; and 69 percent had severe OSA with an AHI of more than 30. Twelve of the 16 subjects with Down syndrome were obese, and there was a significant correl ation between body mass index (BMI) and AHI. Total sleep time in subjects with Down syndrome (307 minutes) was more than an hour less than in controls (380 minutes). Despite the severity of OSA in the study group, medical evaluation had been sought in only one case. According to senior author Carole Marcus, M.B.B.Ch., professor o f pediatri cs at the University of Pennsylvania and director o f the Children's Hospital of Philadelphia Sleep Center, it is well known that children with Down syndrome are at risk for OSA, with a prevalen ce o f 30 to 55 percent, and adults with Down syndrome have even more predisposing factors fo r OSA than children, as they still have the cranio facial anomalies and are more likely to be obese or hypothyroid. "Patients with Down syndrome have a great deal o f risk factors for OSA (based on their narrow mid face, large tongue, floppy muscle tone, tendency towards being overweight, and thyroid disease)," said Marcus. "However, the fact that almost all of the subjects studied had OSA was a much higher prevalence than we expect ed. It was surprising how severe the illness was, and how the OSA was unsuspected by their caregivers." The cohort study included information from 16 adults with DS who underwent evaluation fo r sleep disordered breathing. Subjects were recruited from the local association of Retarded Citizens (ARC), parents of Down Syndrome (PODS) group meetings and the Kennedy Krieg er Down Syndrome Clinic. Eight subjects were recruited from the clinic while the other eight responded to fliers and letters. Participants ranged between 19 and 56 years of ag e with a median age of 33. Half o f the subjects were female (four of whom were postmenopausal); 15 were Caucasian, and one was Asian. Polysomnographic results were matched and compared to a retrospective control sample o f 48 adult patients who underwent standard diagnostic nocturnal polysomnography at the John Hopkins University adult Sleep Center for evalu ation of suspected OSA. Controls had less severe sleep apnea with a median AHI of 16; 54 percent had an AHI o f more than15; 38 percent had an AHI o f more than 30. The authors suggest that obesity, a common and potentially treatable problem in Down syndrome, appears to play an important role in the pathophysiology of OSA in this population. According to the American Academy o f Sleep Medicine, OSA is a sleep-related breathing disorder that involves a decreas e or complete halt in airflow despite an ongoing effo rt to breathe. It occurs when the muscles relax during sleep, causing soft tissue in the back of the throat to collapse and block the upper airway. This leads to partial reductions (hypopneas) and complete pauses (apneas) in breathing that can produce abrupt redu ctions in blood oxygen saturation. Most people with OSA snore loudly and frequ ently, and they often experien ce excessive daytime sleepiness.

Anji’s note: If your child or adult with Down syndrome has not been tested for sleep apnea, ask your doctor for a referral to an appropriate sleep lab. Currently, five GRADSA members are being evaluated and/or treated for this disease. There are often no warning signs to this very serious condition.

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Buddy Walk 2009 honors our “Hometown Heroes”
Army, Navy, Air Force, Marines, Police, and Firemen. We honor them and recognize that their sacrifices, talents, and dedication keep us safe. GRADSA believes that not all wars are fought by soldiers….. Our children and adults with Down syndrome fight every day. Medically, physically, socially, and educationally…..our children and adults have fought to secure their place in our communities. And GRADSA honors their never-giveup attitude this year during our Buddy Walk 2009. On Saturday October 10, 2009 at Moreland Park in Owensboro, GRADSA will pay tribute to our heroes. Each year there are over 280 walks held worldwide. These walks provide communities the opportunity to celebrate individuals with Down syndrome, and their very real accomplishments within the communities. GRADSA encourages each of it’s member families to form a team, and come out and walk with us on this day. Every person who attends the Buddy Walk will come away with a greater understanding and appreciation for Down syndrome.

SATURDAY OCTOBER 10, 2009 MORELAND PARK 11:00 am – 1:00 pm
Don’t forget to preorder, and pick up, your Buddy Walk shirts!!!

Buddy Walk ® 2009 Hometown Heroes
Saturday October 10, 2009 11 am to 1 pm M oreland Park, Owensboro, KY T-shirt Registration:
All GRADSA member families will receive FREE t-shirts this year. This includes the person with Down syndrome, and all immediate family members, residing in the same home. Please return your order fo rm no later than September 18, 2009. You may also order your shirts via email to info@gradsa.org

Name:

Size (Please indicate child or adult) ===================================================================================== ===================================================================================== ===================================================================================== ===================================================================================== ===================================================================================== ===================================================================================== =====================================================================================
T-shirts are available fo r persons outside the immediate families for a donation o f $10 per shirt. Please include payment, checks made payable to GRADSA, with these orders.

Phone Number:

Name:

Size (Please indicate child or adult) ===================================================================================== ===================================================================================== ===================================================================================== =====================================================================================

Phone Number:

PRE-ORDER ONLY
Hooded, sand colored pullover sweatshirts. Adult sizes only S-XL. $25 prepaid by September 18, 2009. These will be available fo r pickup with the Buddy Walk shirts.

Preordered tshirts and sweatshirts will be available for pickup on THURSDAY OCTOBER 1, 2009 5:30 pm to 7:30 pm Old National Bank Hwy 54 location Front conferen ce room Pick yours up early so you can wear them on the day of the Buddy Walk!!

GRADSA and Daviess County Lion’s Clubs PIE AUCTION and CHILI DINNER
Friday September 18, 2009 5:00 pm Daviess County Fairgrounds Highway 54, Philpot, KY We need YOUR help: Volunteers to help with the auction Pies, decorated cakes and baked goods Dinner will be served starting at 5:00 pm Chili, hotdogs and drinks will be available ($3 per person) The auction will begin at 6:00 pm Invite your family, friends and neighbors to come out and enjoy an evening of good food and fun!! If you can donate an item for the auction and need someone to pick it up and deliver it to the auction, contact Deanna Isbill at 270-233-5611. Deanna will be available to pick up your items prior to the auction. All proceeds from the auction and dinner will benefit the Green River Area Down Syndrome Association. For more information, contact Anji Edge at 270-281-0093 or info@gradsa.org

MISSION STATEMENT GRADSA’ S mission is to enable families enriched with the Down syndrome connection to share resources, build friendships and advocate together for the future of individuals with Down syndrome. GRADSA P . O. Box 2031 Owensboro, KY 42302 info@gradsa.org www.gradsa.org SERVICES GRADSA is an affiliate of the National Down Syndrome Society and the National Down Syndrome Congress. GRADSA is a non-profit 501(c)3 organization that provides it’ s members with a bi-monthly newsletter, educational workshops, social activities, a website, a parent outreach program and a hospital outreach program. There are no me mbership fees to join. POLICY STATEMENT GRADSA does not endorse any specific therapy, treatment or educational setting. We provide a variety of information and viewpoints, however, each family must make an individual choice. PRINTING OF ARTICLES GRADSA welcomes articles from parents, professionals and other interested parties. Material for consideration should be sent to Anji Edge at info@gradsa.org. Articles written for HeartStrings may be reproduced if credit is given to the original author and GRADSA. P ermission to reprint articles not original to HeartStrings should be acquired from the original source.

April Smith, P resident P hone: 270-929-3824 email: april.nicole.smith@usbank.com Directors: Tony Hamilton Lori Marksberry P aul P uckett Beth Wimsatt

Stephanie Smith, P resident-Elect P hone: 270-929-4724 email: smithsl@omu.org Michele Cecil, Legal Advisor Deanna Isbill Jamie Mullens Brenda Walker Tony Wimsatt

Anji Edge, Ex. Director P hone: 270-281-0093 email: info@gradsa.org Landon Barrowclough Dwight Beyke Megan Greenwell Buddy Walk Coordinator buddywalk@gradsa.org

Non-Profit Org. U.S. Postage Paid Owensboro, KY Permit No. 120