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a publication of

Down Syndrome Aim High Resource Center, Inc. Providing parent-to-parent and professional services and support to individuals with Down syndrome and their families and educating the broader community about Down syndrome.

Buddy Walk 2009!

There were Balloons...

Banners... From top: Matt Calautti sports some fancy headgear; the crowd winds its way around Iroquois Lake in Central Park; Brandy Swift relaxes with her daughter Ameilia; Full page: Sparkles, the Stilt-Walking Juggler

and Babies! VOLUME 27, NUMBER 4 

FALL 2009

THERE ’S MUCH MORE IN T H I S S P E C I A L I S S U E OF N E W S A N D N O T E S !


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Buddy Walk Balloons, Banners, Babies...and much, much more! -from the desk of the Editor Several weeks have now come and gone since the Capital Region Buddy Walk took place. Going over the photographs and articles, I have had the great opportunity to slowly process what took place on that gorgeous fall day. At the time, there was a veritable feast for the senses – friends, music, food, speeches, colorful shirts and balloons, voices of babies and laughing children, the walk itself – all to be digested in just a few marvelous hours. One of the goals of the Buddy Walk Chair, Kandi Terry, was to involve more of the DSAHRC community in the production stages. The excitement of the day, but also the efforts that went into it ahead of time, are part of the fun you’ll get as you read this special issue of News and Notes. Enjoy! Here’s hoping you’ll all be able to slow down and enjoy the the next several hectic, but magical weeks. Happy, healthy holidays everyone!

Sparkles the Stilt-Walking Juggler makes a new friend

INSIDE THIS ISSUE

A Special Thanks...

Upcoming Events............................... 3

to the official Buddy Walk photographer, Lacey Stratton, and to DSAHRC members Juergen Klingenberg, Rich Dzintars, Vicki Charbonneau, Lisa Connally, Erin Massaroni, and Jill Squires for providing this editor with such great pictures from the event!

President’s Message..........................4 Triple Play Families.............................4 DS Awareness Month.........................5 Words That Walk Winners...............6-7 Buddy Walk 2009!.........................8-11 Conference 2010 Update..................12 Aiming High 2010 Calendar..............12 Dietary Supplement Study................13 Direct Impact Grant Update..............13 Thank You!........................................14

New feature in upcoming News and Notes! Legislative issues and medical developments that may have an impact on individuals with Down syndrome are two areas in which we’d like to keep our readers better informed. We also feel we can never give you enough information on education! In an effort to get more of this kind of news to you, we’ll be featuring an internet website or two that we’ve found to be helpful, starting with the next issue of News and Notes. Do you know of a website that’s especially informative? Please share!

Family Holiday Party.........Back Cover

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is published six times a year by Down Syndrome Aim High Resource Center, Inc. 1 Marcus Blvd., Suite 105, Albany, NY 12205 Phone: (518) 438-1113 Website: www.dsahrc.org Editor: Carol Rowell, (518) 438-1113, editor@dsahrc.org Publications Committee Chair: Brian Collier, (518) 439-5964 Staff: Diane E. Lang, Jody Nicholls Murphy, Ann Nobis, Brianne Nobis Printer: Ludani Printing, Inc.

Statement of Policy and Disclaimer This newsletter reports items of interest relating to Down syndrome and will provide a forum for others. The Down Syndrome Aim High Resource Center (DSAHRC) does not promote or recommend any therapy, treatment, educational setting, etc. We will not espouse any particular political or religious view. Individuals or organizations referred to do not necessarily endorse this publication or its editors. We wish to bring together those interested in Down syndrome and attempt to create an optimistic outlook and attitude. In material submitted for publication, the editor reserves the right to make corrections as appropriate and in accord with established editorial practice. Printing of Articles We welcome articles from parents, individuals with Down syndrome, professionals, and other interested parties. Please send material for consideration to the mailing address (at left). Contents may be reproduced if credit is given to the author and News and Notes; kindly send us a copy. Please note that for material which News and Notes reprinted with specific permission, you must contact the original source.


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UPCOMING EVENTS -Locally and Nationally Unless otherwise stated, all activities take place at the DSAHRC office, 1 Marcus Blvd., Suite 105, (just off Wolf Road near the Holiday Inn). Look for listings of play groups and support meetings in box below!! DSAHRC BOARD MEETING – Monday, December 7 – 6:30 pm – Everyone’s welcome to attend – come and find out what’s next for the DSAHRC! DSAHRC FAMILY HOLIDAY PARTY – Tuesday, December 8 – 6:00 pm – Fun at the TreePaad Fun Center! See back cover to learn more. Ho! Ho! Hope to see you there! DSAHRC SEMINAR – Thursday, December 10 – 6:30 pm – Diane Woodward, Director of Transition Services at Wildwood School, will present Transition Planning. Contact Namita Modasra at nmodasra@dsahrc.org for details. THE DAD’S PLACE AT PARENT-TO-PARENT – Monday, December 14 – 6-8 pm – Support for dads and other male relatives of people with special needs. Holiday party with crafts for dads and kids! Contact Jim Swart at 381-4350 or jmswart1@verizon.net for more information. DSAHRC BOARD MEETING – Monday, January 4 – 6:30 pm – Open to everyone – Bring your ideas and learn more about your organization!

Save these Dates in 2010! Friday, April 23rd and Saturday, April 24th, at the Holiday Inn in Albany – Annual Family Dance followed the next day by the DSAHRC’s “Beyond Our Wildest Dreams!” Conference Friday, October 22 at the Canfield Casino in Saratoga Springs – DSAHRC Gala!

WEARIN’ OF THE RED! The Self-Advocates are Having a Holiday Dance! Friday  December 18  6-9 pm Albany-Shaker Road Firehouse - for ages 13 and up Hang out with friends and dance to the great sounds of DJ Charlie Sims! Pizza, salad, drinks and dessert will be provided Please bring a canned food item for the food pantry! RSVP by contacting Rose Hargrave at 453-8813 or rosehargrave.nycap.rr.com by December 14th

Hope to see you there!

For up-to-date information on items of interest check out the Calendar of Events on the DSAHRC website at www.dsahrc.org

Play Group Gatherings and Support Group Meetings Social groups are a great source of fun and support. Got a gang that gets together regularly? Want to start one? Let the DSAHRC know and we’ll be glad to promote your ideas! Triple Play – For parents of babies, toddlers and preschoolers with Down syndrome. Meets the last Friday of the month in various locations. Contact person: Kirin Buckley at kirinqilin@gmail.com. Tri’d and True Friends – Meets on Saturdays/Sundays in Saratoga/Wilton area. No age limit to participants – everyone’s welcome! Contact person: Joni Rhodes at (518) 695-4627 or at pcjoni@localnet.com. Loving Up the Downs (LUDS) – Parent-driven support network in the Oneonta area, currently serving Otsego, Chenango, and Delaware counties. Contact person: Lisa Depperman at (607) 433-6260. December 1st is the deadline for the next issue of News and Notes. Please contact Carol Rowell at the DSAHRC at (518) 438-1113 or at editor@dsahrc.org for information on submitting items. Thanks!


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A Message From the President, Harm Velvis... “2009 Capital Region Buddy Walk” The 2009 Capital Region Buddy Walk was fantastic and an event to remember. Well organized, well attended, and filled with positive energy and fun. The success of the event can be credited to Kandi Terry, the Event Committee, and all the volunteers. There were so many quality components to the event: the Words that Walk writing campaign, the inspirational words from Brie Nobis, congressman Paul Tonko, and NY Senator Hugh Farley, the singing voice of Rose Hargrave, the Pledge of Allegiance from Patrick Morgan, the complete line-up of entertainment, the beautiful walk around the lake, the food and drinks, the community support, the teams and, of course, the perfect weather. The attendance, estimated at around 800 participants, was larger than ever before. There was magic in the air. Everyone was involved, connecting with old friends and meeting new friends. There was a lot of interaction between the many new families and families with more years of experience under their belts. There was a constant exchange of ideas and of mutual support. The kids did not get tired of dancing. The positive energy that could be felt throughout the event sent a strong message to the community at the event, in the Daily Gazette article, and on TV and radio stations around the region. For the first time our local Buddy Walk served as a fundraiser and the participants came through big time raising around $20,000. In short, the best Buddy Walk ever (and I know we have had many great Buddy Walks before), Buddy Walk Chair Kandi meeting all its goals of supporting individuals and families, raising awareness in Terry with her husband, the community, portraying a positive image of people with Down syndrome, and Dan, and son Nathan raising money. Thank you so much Kandi. Thank you volunteers, sponsors, and participants.

Triple Play Group Continues to Grow! Kirin Buckley reports that Triple Play, a social group for parents of infants, toddlers, and pre-schoolers who have Down syndrome, is up to 30 families! This very active group has decided to put together a directory of participating families which will include contact information, the school district in which they live, and experiences they’ve had (for instance, medical, daycare, or sibling issues) that they’d be willing to discuss. Questionnaires have been mailed out – if you’d like to be part of this great project, please return yours by November 30th. Kirin Emmie hopes to have these available to Triple Lautenschlager Left: Anna says, “I’m going to Play families by the end of the year. Callie with be in the Triple Play her mom and Family Directory – dad, Sheila why not join me?” Seery and

a nd speaking of our Triple Play families...

Thoughts of a Very Proud Grandma: Our darling, Anna Callie, is now 6-1/2 months old. Whatever joy the initial diagnosis might have taken away has been replaced by a vibrant, loving and absolutely beautiful little girl. Watching her grow and thrive often takes my breath away. Her smiles and giggles make my day. Here’s some photos to show you what I mean. Love, Right: Proud grandma Anne-Marie Anne-Marie Seery Seery with her granddaughter

Vince Romeo


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DOWN SYNDROME AWARENESS MONTH 2009... groups and families participated in a number of ways... THE SELF-ADVOCATES GROUP gathered one Saturday morning at the Hargrave home to tie-dye t-shirts for the many volunteers who would be working at the Buddy Walk. Maggie Rowell and Gayle Farman prepare a shirt for tie-dyeing, as Billy Spillman works at another “paint station”.

THE SIBLINGS GROUP stuffed hundreds of sportpacks for Buddy Walk attendees who raised funds for the DSAHRC. Above: Sibs included Kelsey Wein, Devin Mahoney, Luke Temperine, Genny Rowell, Ryan Mahoney, Claire Connally, Eunu Song, Dan Lang, Justine Aloise, and Greg Lang; right: James Yooha Song helped!

CONNALLY FAMILY SPREADS THE WORD October 12, 2008 – that’s the day we began spreading awareness about Down syndrome. It’s the day that Coco was born and the day that our family set out on a new journey. Spreading awareness about Down syndrome is a family effort that is embraced by all, and an effort that we will continue. We quickly started educating and preparing our two oldest children, Claire, age 11, and Owen, age 9, to become advocates for their sister, but more importantly for all individuals with disabilities. In celebration of Down Syndrome Awareness Month, we wanted to do something in school that would help promote awareness. We came up with the idea to make Coco’s Buddy Bracelets. The bracelets are made from three strands of yellow thread and three strands of blue thread, knotted together to become a friendship bracelet that all kids love to wear. It is our hope that their classmates will wear these bracelets in celebration of Coco and all individuals with Down syndrome.


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First Place Winner is 10-year old Kaylynne Enloe, a 5th grader at New Scotland Elementary School! “Evan, My Baby Brother’ by Kaylynne Enloe

Kaylynne Enloe (left) receives her prize from DSAHRC president Harm Velvis and Buddy Walk Chairperson Kandi Terry (far right); Diane Lang and NYS Senator Hugh Farley look on.

My mother says “All children are special”. Evan was born on August 30, 2006. He was born 13 days early. He was supposed to be born on September 12th. Evan was born two days before my brother A.J.’s 5th birthday. Evan has special needs. He has Down syndrome. Down syndrome means that he has an extra chromosome. He has three chromosome 21’s which means he may learn a little bit slower than someone who doesn‘t have Down syndrome. He does things like walk and talk but he does it in his own time. We are very lucky because he is very healthy. Most kids born with Down syndrome are not as healthy as he is. Sometimes they have breathing or heart problems. Evan is getting Early Intervention Services. Early Intervention Services are for kids with special needs. It is designed to teach them age appropriate skills. He gets speech therapy, physical therapy, occupational therapy and special instruction. That means people who work with kids with special needs come to our house and spend time with Evan. They teach him every day skills he needs to know. My mom doesn’t like it when you say, “Down syndrome people”, she prefers when people say, “people with Down syndrome”. I love my baby brother a lot. I love to play with him, I love his smile, and I love his laugh. Evan loves to play. He will wrestle, play cars, dance, do ring around the rosie, and sometimes he chases me. He loves to cuddle and snuggle. He loves kisses and hugs. Evan loves to eat. When he sees my mom cooking he yells because he wants food. Evan is like any other child, he just needs a little more help than children without special needs. So, before you make fun of someone with special needs you should think of how you would feel if you had special needs and someone made fun of you. It is easier to get to know a person than to make fun of them. I would not change anything about my baby brother because he is very special to me and my family. And just like my mother says, “All Children Are Special.”


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Second Place Winner is 9-year old Jared Gregor of Clifton Park! “My Friend with Down Syndrome” by Jared Gregor Did you know that one out of every 800 people have Down syndrome? One of them is my friend Nicholas Izzo. When you see him, he may only look like he is three or four but he is really nine years old! Most people can’t understand Nick, so that makes them think he can’t understand them, But he can! For example if I ask him to play a video game with me, he will come play with me. Nick is in a Down syndrome group. His Down syndrome group meets every once in a while, with other kids that have Down syndrome. They do fun activities like they draw pictures, play with toy cars, play ball, and watch movies. Don’t worry Down syndrome is not a cold, virus, or disease. You have to be born with it. In the beginning I sort of ignored Nick, but last summer I found out he likes to play and do some of the same stuff as me and my brothers. Nicholas likes to watch Second place winner SpongeBob and ride in a wagon. Nick is not a boring kid that just sits around all day. Jared Gregor is cheered on by Diane Lang of the Nick likes to do some funny things too. He once rode a skateboard on his DSAHRC. brother’s back. Nick has a twin brother named Jason, and a younger sister named Rosemarie. They do not have Down syndrome. He likes to play with his brother and sister. Nick’s mom said, “Kids with Down syndrome may look different on the outside, but on the inside they are the same. They can think, they have feelings, they can be happy, they can be sad.” You should not think that kids with Down syndrome are scary, maybe next time you see someone with Down syndrome you should hang out with them.

Third Place Winner is Anthony Raus, an 8th grader at Algonquin Middle School in Averill Park! Third place winner Anthony Raus

“Kids are Special” by Anthony Raus

All k ids are special in their own way. Some are black, white, Asian and other races. We are different sizes, shapes and ages and we all have different talents and like different things. Some may be slower than others but that doesn’t matter because they are getting the help they need. Though there are some kids with disabilities they are just like you and me and should be treated the same way. If we were all alike the world would be a boring place. All kids are special and I am glad for that.

WORDS MAKING A DIFFERENCE We received some great entries to our Words that Walk campaign and wanted to share just a few highlights of some of the other entries that were submitted... “I love my brother because he… is one-of-a-kind!” “Yes, I think I will have many times to experience the joys and pains of walking throughout my life.” “We all have our challenges, we all have our pains. We are all different but the same.”

While it is impossible to include all the entries in this issue, every one of our students did a great job and we thank them for their words of inspiration!!!


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FALL 2009

On a beautiful day in early October, almost 1000 people took a joyful walk around the lake in Central Park to celebrate individuals living with Down syndrome....

Ava Charbonneau is amazed by her school teacher dressed up like a clown – Chris S. of Spotted Zebra

State Senator Paul Tonko chats with Craig Van Evera

The Marines were at the Buddy Walk, including DSAHRC dad, SSgt Donald Toro, pictured here in the center


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It was a fun time for all!

Christopher Hogan leads the crowd in a dance Rowdy, the Albany River Rats mascot, hangs out with his new buddy, Lily Foy

WALKING TO PROMOTE INDIVIDUALITY AND INCLUSION A thousand families, friends and neighbors kicked off Down Syndrome Awareness Month by participating in the Capital Region Buddy Walk, our one-mile inspirational pledge walk to raise awareness and funds to support families with Down syndrome. This year’s Walk, supported by presenting sponsor the NYS Correctional Officers and Police Benevolent Association and several other sponsors, was a huge success in so many ways. Vital funds were raised to continue our mission, attendance was nearly doubled from previous years, there was a large media turnout and, most of all, fun was had by all. Families embraced the day, forming teams and donning fun t-shirts and balloon hats. “Our hope is to inspire those touched by Down syndrome and all of our youth to reach their fullest potential and become active members of their communities,” said Kandi Terry, event organizer. “This year’s Buddy Walk far surpassed our goals and offered a day of inspiration and celebration to the community.” The newest additions to this year’s Walk included performances by Sparkles, the stilt-walking juggler, and Diane the Butterfly Clown, along with a visit from Rowdy, the Albany River Rats’ mascot. A special “thank you!” to everyone who attended and gave pledge funds and donations. Your support allows us to make this event and other programs better every year!


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FALL 2009

Many special thanks are due to all the folks who worked so hard to make the Buddy Walk such a great success and to the Sponsors whose generous donations added so much to the day in so many ways...

WALK KICK-OFF SPONSOR HEALTH AND WELLNESS SPONSOR PRESENTING SPONSOR

SPORTPACK SPONSOR

WATER BOTTLE SPONSOR

A special thank you to our in-kind sponsors for their donations of food and products that helped make this year’s Walk our best ever!

ACTIVITIES SPONSOR

Albany River Rats BJ’s Wholesale Club Bountiful Bread Carioto Produce Classe Catering

Deli Warehouse Freihofers Garelick Farms Hannaford Party City Party Warehouse

Sam’s Club Starbucks Stewart’s Subway Walmart

A BIG THANK YOU SPECIAL THANKS GOES TO PET SPAS OF AMERICA FOR SPONSORING WORDS THAT WALK! LASTLY ,

TO

ERIC MASON FOR ONCE AGAIN PROVIDING THOSE GREAT SNO-CONES!

T H A N K S TO T H E

BUDDY WALK COMMITTEE

FOR THE MANY HOURS , CREATIVE IDEAS , AND TREMENDOUS ENERGY THEY PUT INTO THIS WONDERFUL EVENT !

Thanks to all the volunteers who organized us, cheered for us, and, of course, fed us! Buddy Walk food servers included Fawn Mcclintock, Susan Brink and Lori Smith.


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Lastly, huge teams of families and friends were a presence at this Buddy Walk. Here are tales of two of those families - one with a newborn, the other with an almost-teen... Dear Braden, When you were in your mommy’s belly, we all kept saying how excited we were to meet you. The second I put my hand on your mom’s stomach to feel your kick, I knew that I loved you. The night that we found out that you were coming, I was so excited! I was finally going to meet you. We were all saying what a beautiful and perfect baby you were going to be. The next day when I heard my mom on the phone, I knew that something was wrong. When she told me that you had Down syndrome, my heart hurt. I asked my mom if you were going to be okay and she said “we are going to make Braden the happiest person that he can be.”

Olivia Bobarakis and Braden Massaroni

When I heard the news, I wanted to meet you so bad. You were the cutest thing I had ever seen. Your hair was so soft and your fingers were so long and smooth. As we were leaving, I was thinking about how we said that you were going to be beautiful and perfect….well both of those things came true. I love you, Your Cousin ~ Olivia

Team Massaroni

Ryan has been mainstreamed since he was in kindergarten at Jefferson Elementary School within the Schalmont School District. He has a wonderful group of friends who encourage him and treat him like any other friend. I swear Ryan knows more people in Rotterdam than I do! He is always greeted with hellos and high fives everywhere we go. I was so worried this year with Ryan moving up to middle school because you hear stories about how kids change in middle school; our experience has been nothing but positive. The friends he established in elementary school are still his friends. Ryan has such a great personality that everyone wants to be around him. He is very loving and kind and mixed with the typical roughness of boys. Team Squires - that’s Ryan sitting on his dad’s knee Ryan has an older brother, Dan, who is a junior and all of his friends are equally as great to Ryan. One friend he became close with last year, Kennedy Cronk, heard about the Buddy Walk and decided to ask a few friends to walk and raise money. This was something she did on her own with little help from her parents. She sent letters to some of Ryan’s closest friends and there was such a positive response – everyone wanted to be a part of it. Team Squires consisted of 36 friends and family and we raised over $1400. I know many of his classmates thought the experience was awesome and can’t wait to do it again next year. - Jill Squires, Ryan’s mom


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SAVE THE DATE!

“Beyond Our Wildest Dreams Conference” will be held on April 24, 2010 with the theme: TEAMWORK!

Photo by Justin Ide

The DSAHRC Conference Committee worked hard this summer to identify a conference theme and speakers to make the 2010 conference better than ever! We are pleased to announce that we will be back at the Holiday Inn on Wolf Road in Albany on Saturday, April 24, 2010, and we will continue our recent tradition of having a Family Dance the night before on April 23rd. The theme of the upcoming conference will be “Teamwork”. We have issued a Call for Presentations outlining topics relevant to this theme including: Teamwork in education settings, the work world, community living, the work environment, our religious communities, social activities, health and medical needs, sports and much, much more! In an effort to broaden our Sibling Program, and to emphasize the critical role of siblings on the team across the life span of individuals with Down syndrome, the Committee is honored to announce that we have secured Brian Skotko, M.D., M.P.P. as one of our expert speakers.

Brian Skotko is a genetics fellow at Children’s Hospital Boston, Massachusetts General Hospital, and Brigham & Women’s Hospital, who has dedicated his professional energies toward children with cognitive and developmental disabilities. In 2001 he co-authored the national award-winning book, Common Threads: Celebrating Life with Down Syndrome and, most recently, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. He is a graduate of Duke University, Harvard Medical School, and Harvard’s John F. Kennedy School of Government. Brian recently authored major research on how physicians deliver a diagnosis of Down syndrome to new and expectant parents. He has been featured in The Wall Street Journal, The New York Times, The Washington Post, The L.A. Times, National Public Radio’s On Point, and ABC’s Good Morning America. Brian serves on the Board of Directors for the Massachusetts Down Syndrome Congress, the National Down Syndrome Society, and Band of Angels Foundation. He further serves on the Professional Advisory Council to the National Down Syndrome Congress. Dr. Brian Skotko

Dr. Skotko brings first-hand knowledge to his workshops as a sibling of an adult with Down syndrome. Dr. Skotko and his colleague, Sue Levine, have been leading all-day and multi-day workshops for brothers and sisters who have siblings with disabilities at local and national conferences. In these workshops, brothers and sisters have opportunities, through interactive exercises, games, and role-playing scenarios, to learn more about disabilities in an accepting and confidential environment with peers. Brothers and sisters come away from the workshops with more information, social connections with peers, and early lessons on advocacy. We will continue to update you on the exciting additions to the 2010 Beyond Our Wildest Dreams Conference! Mark your calendars and tell members of your personal own “teams” all about it!


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Rational Gene Targeting, With Diet, in Treating Down Syndrome Tara Renna, Shazaan Hushmendy, Devang Bhoiwala, Alex Mathew and Dana Crawford (Center for Immunology and Microbial Disease, Albany Medical College, Albany, NY) Many dietary treatments have been tried to improve the symptoms of Down syndrome. These go back as far as the so-called “U-series” over 50 years ago. This mixture of 48 ingredients claimed to improve the intelligence and appearance of children with Down syndrome, but no benefit was ever proven. The most notable successors to the U-series include Warner’s Hap Caps, MSB, and ...it would be valuable to hear Nutrivene products, all products that are currently still on the market. In from the local Down syndrome addition to these, there are many anecdotal stories claiming improvements from the use of different supplements although, for each of these, others community regarding their using the same supplements observe no effect. experience with fish oil,

grape extract, or any other Based on this lack of scientifically-proven benefit, the National Down Syndrome Society has decided not to endorse the use of such supplement. vitamin-related therapies to treat Down syndrome. In addition, a recent study published in the British Medical Journal concludes that giving babies with Down syndrome antioxidants and nutrients does not help their condition improve at all, and states that until evidence of any benefit of expensive vitamin supplements is available, they cannot be recommended. Despite this lack of convincing scientific evidence, however, the use of vitamin and mineral supplements is widespread in Europe and the USA, in part due to claims that commercial preparations have substantial benefits. Our laboratory has considered a novel dietary approach to treating Down syndrome; namely, targeting the genes responsible for this condition. An extra (or partial) chromosome 21 is responsible for Down syndrome, leading to an excess of its approximately 300 or so gene products. Recently, two of these genes have been identified as key and possibly even most important to this syndrome – RCAN1 and DYRK1A. Our lab co-discovered RCAN1 and has been studying it for the last ten years. We reason that if the products of these two key genes, which are elevated in Down syndrome, can be reduced toward those levels observed in the general population, that there will be a substantial improvement in this condition, including cognition. We call this approach “rational gene targeting”. To achieve this goal, we have chosen to test dietary supplements with known health benefits, since their use would be simple, healthy, and cost-effective. Unlike the U-series and other products currently on the market, the healthy dietary supplements that we would recommend as treatment must prove able to decrease the product levels of these two key genes (RCAN1 and DYRK1A). We have recently screened a number of such agents in mice including fish oil, grape extract, curcumin, ginkgo, fruit extract, garlic and others. We observe that fish oil and possibly grape extract appear to reduce RCAN1 significantly, and thus may have potential use in the treatment of Down syndrome pending additional studies. At this stage, it would be valuable to hear from the local Down syndrome community regarding their experience with fish oil, grape extract, or any other such supplement. Such feedback might contribute to the selection – or even exclusion – of specific supplements from our study. We thank the greater Capital Region Down syndrome community in advance for their comments and suggestions on this matter. Dana Crawford, PhD (518) 262-6652 crawfod@mail.amc.edu

Important 2009 Direct Impact Grant Update Due to the overwhelming number of requests received by the DSAHRC for Direct Impact Grants, the 2009 budget allocation for this program has been exceeded. As a result, no more reimbursements will be considered for the remainder of 2009 for grant requests for Personal Development Grants and Conference Scholarship Grants. However, you may still request reimbursement for Swim Lessons/Water Therapy Classes for 2009. Any member wishing to be considered for a Direct Impact Grant for programs that occur in 2010 can download the application off the website, or contact the DSAHRC.


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THANK YOU!

FALL 2009

A sincere thank you to the following individuals, families, and organizations for their generous donations. All gifts are greatly appreciated and assist the DSAHRC in achieving its mission.

In Honor of Emily Lautenschlager Lacey & Eric Lautenschlager

General Donation Alan Agardi Scarlett Duncan Jack & Vilma Farman Albert & Katherine Frazee

In Tribute to Dennis Meyer Charles & Anna Lobosco In Honor of Mary Alice Niday Wells Fargo Community Support Campaign

In Honor of Michael Lobb Karen’s Flower Shop Richards Funeral Home of the Mid-Hudson Valley, Inc.

In Memory of Gabriel Agardi Judith Falcone Miller In Memory of Maureen Theresa English by MIckey English Gold’s Gym-Latham

In Honor of Ryan Squires Elinor Squires

In Honor of Lillian Mabee Francis & Judy Helion

In Memory of Thomas Unser Les & Kimberly Dunster Dave Lifford

In Memory of Jason Anthony Scavo, Jr. Bonesteel, Donna & Lawrence Brunswick Center United Methodist Church Sunday School Thomas & Holly Cole District 3 Road Division AMA Fraternal Order of Police Margaret Hems Diane E. Lang Beatrice LaClair & Geraldine Griswold Gerald & Lorraine Looney

Thank You, Corporate Sponsors, for Supporting the DSAHRC!

Schoolhouse Road Pediatric Associates, Inc. 81 Schoolhouse Rd., Albany, NY (518) 456-1211

of Northeastern New York, LLP 35 Hackett Blvd., Albany, NY 12208 (518) 262-5575

Margaret Maney W. Daniel & Elaine McIntyre Suzanne Lawlor Morlock John & Barbara Nottke Elaine Naylor Timothy & Joanne O’Hara Michael & Phyllis Ricci Michelle Scavo John & Marie Stasiak


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Self-Advocate Please contact me about volunteering with the following committees:

Would you like a DSAHRC staff member to contact you? ANNUAL DUES: Family – $25.00, Self-Advocates – $10.00 I am proud to enclose an additional tax-deductible donation of $ Amount Enclosed: $ I have enclosed a check made payable to DSAHRC Please charge my credit card (circle one) Visa MC AMEX DISC Card # Exp. Date Sec # Please mail to: DSAHRC, 1 Marcus Blvd., Suite 105, Albany, NY 12205

Thank you!

Administrative/Membership Conference Education Events Fundraising Legislative/Public Relations Publications/Calendar Self-Advocates Other

BOARD OF DIRECTORS

DSAHRC OFFICE INFO

President . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Harm Velvis Vice-President . . . . . . . . . . . . . . . . . . . . . . .Bill Van Evera Secretary . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Mary Grace Treasurer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Dave Yule

We’re open Monday-Friday, 8:00-4:00, but sometimes our work takes us out of the office – please call before coming! Other hours available by appointment - please come see us! 1 Marcus Boulevard, Suite 105, Albany, NY 12205 e on Phone: (518) 438-1113; Fax: (518) 438-2716 New Ph Website: www.dsahrc.org and Fax ! s Executive Director: Diane E. Lang r e Numb dlang@dsahrc.org Administrative Assistant: Debbie Baldwin dbaldwin@dsahrc.org Program Development Coordinator: Marietta Schork Velvis msvelvis@dsahrc.org Newsletter Editor: Carol Rowell editor@dsahrc.org President of the Board of Directors: Harm Velvis hvelvis@dsahrc.org The DSAHRC office space is available for meetings, social events, etc. and is conveniently located off Wolf Road, near the Holiday Inn.

Administrative/Membership Chair . . . . . . . . . .Mary Grace Conference/Seminar Chair . . . . . . . . . . . . . .Gayle Farman Education Chairs . . . . . . . . . . . . . . . . . .Virginia MacPhee . . . . . . . . . . . . . . . . . . .Namita Modasra Events Chair . . . . . . . . . . . . . . . . . . . . . . . . .Kandi Terry Fundraising Chairs . . . . . . . . . . . . . . . . .Brian Temperine . . . . . . . . . . . . . . . . . . .Bill Van Evera . . . . . . . . . . . . . . . . . . .Eddie Affinito Legislative/PR Chair . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Publications Chair . . . . . . . . . . . . . . . . . . . .Brian Collier Self-Advocates Chairs . . . . . . . . . . . . . . . .Patrick Morgan . . . . . . . . . . . . . . . .Brianne Nobis . . . . . . . . . . . . . . .Rose Hargrave Currently all Officers and Board members, with one exception, either have a family member with Down syndrome or they themselves have Down syndrome. The ages of our children range from infancy through adult years. Our Board members have had various life experiences. No two of us have chosen the same path or made the same decisions. Our diverse experiences help us as we plan programs and activities for the DSAHRC community. Board meetings are held at 6:30 pm on the first Monday of each month at the DSAHRC office, 1 Marcus Blvd., Suite 105, in Albany. Everyone is welcome to attend – please call ahead to make sure the meeting is taking place as scheduled.

OUTREACH PROGRAMS Do you know someone with Down syndrome who is sick or hospitalized and could use some cheer? The Sunshine Committee provides baskets of goodies to help during difficult times. Do you want information about Direct Impact Grants? Need to talk to a New Parent Contact? Have a question only a grandparent can answer? Then please contact the DSAHRC at (518) 438-1113 or at info@dsahrc.org to learn more about these and the many other programs we offer to assist families.


CELEBRATE THE HOLIDAYS WITH DSAHRC FRIENDS! Come Party at the TreePaad Fun Center! Tuesday  December 8  6-8:30 pm Plan to join DSAHRC families and friends for a fun time at the TreePaad in Malta this coming holiday season! There’ll be snacks, games, a special guest of honor*, and all the great activities you usually find at the TreePaad. *Santa will be there for an hour. Bring a wrapped gift with your child’s name on it if you’d like he or she to receive a present from Santa. Photos with Santa will be available, too! $10 per person covers 2 ½ hours of unlimited access to the Center, including Fort Ballocity, Rock Climbing Wall, Spider Zone, LaserTag, and the Toddler Softplay Area… good for kids from toddlers to adults! For each ticket sold, the TreePaad Fun Center will donate $3 to the DSAHRC! Tickets are required and can be purchased at the Treepaad’s website, www.treepaad.com, at the DSAHRC office, or through the DSAHRC website at www.dsahrc.org TreePaad Fun Center is located at 2381 Route 9 in Malta (518) 289-5475

HO! HO! HOPE TO SEE YOU THERE! Non-Profit Org.

US POSTAGE PAID Permit No. 759 Albany, NY

1 Marcus Blvd., Suite 105 Albany, NY 12205

MOVING? Don’t miss an issue of News and Notes due to an address change! The Post Office does not forward the newsletter and it charges the DSAHRC for each undeliverable newsletter, so please call, write, or e-mail us to update your information – thanks!


News & Notes - Fall 2009