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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.

Spring..a time of gatherings... and smiles! There were multi-generations in chorus lines at the DSAHRC Family Dance, group hugs at the Beyond Our Wildest Dreams spring conference, and lots of cute kids when the playgroup Triple Play met recently. Being together just feels right sometimes.

You’ll find Conferences, Dances, Babies and more in this issue of News and Notes! VOLUME 27, NUMBER 2



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The amazing human spirit... -from the desk of the Editor The human spirit never ceases to amaze me. My husband often observes that although our daughter who has Down syndrome may have more excuses than anyone else in our family to be miserable, she actually has the best attitude of all of us. She’ll always tell you her school has been “great!”, no matter how many struggles you know she’s dealt with that day. We’re not buying into any generalizations about Down syndrome, it’s just who she is. Our Down syndrome community sadly lost two wonderful, much-loved members recently (see page 4). When I think of them and their families, as well as my own, I can’t help but think of how living a life with so many challenges often produces some of the most fun, caring, loving people I know. That says a lot about the human spirit. I am grateful to have known these young men and their parents and to be part of this community. Recently there have been lots of new little human spirits with Down syndrome born in the Capital Region. Many showed up at the Family Dance (see page 6), and they have been getting together at a new playgroup called Triple Play – you can find more information about the group on page 3 and see some of them on the cover of this newsletter. Welcome babies! Welcome new parents! Welcome to this wonderful, amazing community.

Look for exciting changes to the DSAHRC website in June! Publishing Committee Chair Brian Collier and Juergen Klingengberg of Hound Dog Graphics report that lots of great changes will be taking place soon at www.dsahrc.org – stay tuned!

INSIDE THIS ISSUE Upcoming Events............................... 3 President’s Message..........................4 Buddy Walk News...............................4 Self-Advocates Update.......................5 Help Needed.......................................5 Websites Worth Checking Out............5 Family Dance and Conference........6-7 New “Words That Walk” Program.......8 Boardmaker, Writing With Symbols....9 Thank You!........................................10

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Changes in the DSAHRC Board Elections were held in late April at the DSAHRC General Membership Meeting. As we welcome Eddie Affinito and Rose Hargrave to the Board, we must say “goodbye and thank you” to Joanne Fitzgerald and Renée Hallock. Both Joanne and Renée served as presidents of Down Syndrome Aim High in the past; their experience, energy and enthusiasm have been greatly appreciated as the Board of the new organization, the Down Syndrome Aim High Resource Center, went to work. We wish them the best with all their projects – they’re busy people! – and look forward to seeing them at future DSAHRC events. Joining the Fundraising Committee, Eddie has a daughter with Down syndrome. Rose, who also has a daughter with Down syndrome and served on the Aim High Board years ago, will be working with the Self-Advocates Committee. We’re glad to have you both on board!

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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) 374-8253, editor@dsahrc.org Publications Committee Chair: Brian Collier, (518) 439-5964 Staff: Emily Jahn, Diane 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!! FATHERS NETWORK MEETING – Monday, June 15 at Parent-to-Parent in Schenectady – 6-8 pm – Support for dads, and other male relatives, of kids with special needs. Contact Jim Swart at 381-4350 or jmswart1@verizon.net. T S ALMOST TIME FOR INFO SESSION at DSAHRC – Tuesday, June 16 – 6-7 pm – Learn about Massage and Sign Language! SELF-ADVOCACY REGIONAL CONFERENCE – Thursday, June 18 – Visit www.sanys.org for more information about this day long event at Union College. DSAHRC AT THE VALLEY CATS OPENER – Saturday, June 20 Dinner, ballgame, and more! See back cover for more info. DSAHRC BOARD MEETING – Monday, July 13 – 6:30 pm Note special date. Join us as we plan what’s next for the DSAHRC! NATIONAL DOWN SYNDROME CONGRESS CONVENTION – July 31-August 2 – To be held in Sacremento, CA this year. Visit www.ndsccenter.org for details.

Save the Dates - More Info to Come! Schuylerville Turning Point Parade – Sunday, August 2nd Participate in the parade, followed by a pot-luck and pool party! 4th Annual Summer Family Picnic – Saturday, August 22nd Benefit for the DSAHRC at Colonie Town Park 7th Annual “Tearing Up the Turf for Timothy” Golf Tournament – September 20 – to benefit the DSAHRC

I ’

BIKE CAMP!!!

...

Know someone with a developmental disability who wants to ride a two-wheeler? Tell them about Bike Camp! The DSAHRC, along with STRIDE and the Autism Society, will once again offer “Lose the Training Wheels” this summer at Union College, July 6-10. Contact the DSAHRC or visit www.stride.org for more information!

12th Annual DSAHRC Buddy Walk – Sunday, October 4th Fun family event in Schenectady’s Central Park 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 Kirin Buckley at kirinqilin@gmail.com for more information. Tri’d and True Friends – Meets on Saturdays/Sundays in SaratogaWilton 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. July 1st is the deadline for the next issue of News and Notes. Please contact Carol Rowell at (518) 374-8253 or at editor@dsahrc.org for information on submitting items. Thanks!


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A M e s s a g e F r o m t h e P r e s i d e n t , H a r m V e l v i s ... “ Sad News to Share” Thursday, April 2nd was a sad day for the Aim High community. Two lifetime members of Aim High, Thomas Unser and Christopher Vooys, passed away that day. Tom was only 19 years old and passed away suddenly at home. Chris was only 31 years and passed away after a relatively short illness, also at home. Tom and Chris were both involved with Aim High and attended many events over the years. Both these young men were certainly unique characters with wonderful abilities. Tom was a great source of love and compassion. He was actively involved with family and friends, he loved gardening with his father, and he enjoyed the outdoors with a special place in his heart for baseball. Chris was known as the master conductor of his environment, he was an active member of his church, worked at Stewart’s, and was very involved in Tom Unser horseback riding and power lifting. The services for Tom and Chris in Ballston Spa and Brunswick, respectively, were both emotional outpourings of remembrance from family and friends and beautiful tributes to the lives of two very accomplished young men who both influenced so many people in so many different ways. Many in the Aim High community think of and pray for Tom’s parents, Bonnie and Chris Vooys Tim, and their family and for Chris’ mother, Connie, and her family. At the national level, Dr. William Cohen passed away on February 6th at the young age of 62. Bill Cohen was a developmental-behavioral pediatrician and he played an important role in the Down syndrome community. He was director of the Down Syndrome Center of Children’s Hospital of Pittsburgh, co-founder of the Down Syndrome Medical Interest Group (DSMIG), author of the Medical Guidelines, a Board member of the National Down Syndrome Society (NDSS), and a strong believer that people with Down syndrome deserve the best from medical providers and society. Bill Cohen also played an indirect role in the establishment of the Down Syndrome Resource Center (DSRC) in Albany. I visited him in 2001 in Pittsburgh to talk about starting a Down Syndrome Clinic in Albany. I remember his smile, his hospitality, and his generosity sharing his experiences. He told me that a Down Syndrome Clinic is not a separate place, not a visit with as many specialists as can be crammed into one day, but rather a concept made possible by passion and a dedicated coordinator. That visit (and some fundraising) resulted in hiring Diane Lang as the Medical Coordinator of the DSRC. At first the energy of the DSRC was largely focused on medical issues. Diane worked closely with Dr. Tony Malone’s developmental pediatrics group. Things have evolved since that time. As the DSRC became a true all-around resource center addressing a large spectrum of issues, Diane’s role evolved into the position of Executive Director, and the DSRC successfully merged with Aim High. I will never forget that visit with Bill Cohen that changed so much right here in the Capital Region. Tom, Chris, and Bill were amazing individuals, who changed our communities for the better, each one making their own unique contributions, and each one affecting family and friends in a way that will live on forever.

CAPITAL REGION BUDDY WALK A New Look, Same Great Cause! Walk for Down syndrome and raise pledge donations to further support the mission of the DSAHRC. Plus, enjoy a day of activities, entertainment and fun!

SAVE THE DATE: Sunday, October 4, 2009 - Schenectady Central Park Details to follow!

CAPTIALREGIONBUDDYWALK .ORG


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Self-Advocates News “DSAHRC Self-Advocates Conference” by Brie Nobis Brianne (Brie) Nobis is a self-advocate and co-chairs the DSAHRC Self-Advocates Committee Last month at the DSAHRC conference, Michael Cardella, Steve Holmes and myself had a morning filled with fun and dreams. Michael and I were asked to do a 20-25 minute speech about our dreams and how we live our lives. If I were to go beyond my wildest dreams they would include many things. One of my dreams was to become an Intern and have an experience being an intern at the Office of Children and Family Services. I am living that dream, now as I am currently working in the Adoption Unit. I am responsible for handling and distributing all the incoming mail. It is a lot of responsibility, but I am good at it, and love the freedom I have as a result of my job. Steve Holmes played a couple of his songs and we accompanied him signing my favorite song, “We Don’t Need Any R-Words”. After we sang, Steve led the group in a “Shout-Out” to talk about our dreams. Everyone enjoyed telling the group about the dreams they have for their future.

Help Needed!

Michael Cardella (center), a conference presenter, surrounded by attendees and College of St. Rose students.

Parent of 23 year old young man looking to pay a student 18 years or older to accompany him to an overnight camp in Goshen, Vermont, the first week in August (8/2 through 8/8). Food, accommodations and transportation provided. Interested parties please response to pruth16@nycap.rr.com or call (518) 608-5086. Male or Female can apply as he has had Female Aides in the past. Thank you.

Scholarship for Self-Advocates is Available Through NDSS The Joshua O’Neill and Zeshan Tabani Enrichment Fund was created to provide financial support to individuals with Down syndrome who are pursuing postsecondary education. Applications are now available through the National Down Syndrome Society (NDSS). To date, grants of up to $1000 each have provided assisted 26 students. To learn more, visit www.NDSS.org or contact Erin Geller at 1-800-221-4602 or at egeller@ndss.org.

Websites for Siblings, Self-Advocates, and Shopping! Three websites have been brought to the attention of the staff at the DSAHRC recently – check ‘em out! www.sibsny.org brings you to the website of sibsNY, “a volunteer organization dedicated to providing the siblings of individuals with intellectual, developmental and learning disabilities with information and support. Comprised of siblings and providers of sibling services throughout New York, sibsNY is committed to connecting siblings to each other and to the resources they need to help them and their siblings with disabilities live the most fulfilling lives possible.” The site includes info on gatherings, blogs, listserves, Facebook, and more. Special Friends is a website for people with learning and intellectual disabilities, as well as their parents and care-givers. It provides an opportunity for self-advocates to chat, instant message and make lots of friends all over the world while in a safe and secure environment. Visit it at www.specialfriendsonline.com/public/ Lastly, the folks at Cafe Press are offering shirts, hats, stickers, and more with great messages about Down syndrome, disability awareness, and lots more topics that might be of interest to our readers. And boy, do some of those messages come with an attitude! Check the site out at www.shop.cafepress.com/down-syndrome. Got a favorite website that would be of interest to members of the DSAHRC community? We’d love to hear about the experiences, both good or bad, that you’ve had in cyberspace!


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THERE WAS MUSIC AND MAGIC AT BOTH ENDS OF THE RAINBOW It was a great weekend of dancing and drumming, laughing and learning, at both the DSAHRC Family Dance and at the Follow the Yellow Brick Road...Beyond Our Wildest Dreams conference! On Friday night 240 family members and friends gathered to boogie to the great sounds of everyone’s favorite band, Flame. The next morning, over 200 conference attendees “warmed up” for the day with a rousing session on drums of all sizes, followed by a moving presentation by keynote speaker Carrie Bergeron Desai and an engaging plenary session with Dr. Lou Brown. After a full slate of speakers, activities, and opportunities to network, parents and professionals were treated to a very loud and very exciting program put on by the Self-Advocates and Siblings, featuring drums, hand clapping, and voices, all under the direction of Matt Giordano of Drum Echoes, Inc. It truly was an event we’ll all remember! Thanks to our Family Dance Volunteers!

Congratulations to the Big Raffle Winners!

Rich Dzintars Mike, Debbie & Katie Gilligan Mary Grace Dan and Greg Lang Ann Nobis Kandi Terry Bill Van Evera Harm, Marietta and Mark Velvis

First Prize-$15,000: Todd Grimm Second Prize-$2500: Mark France Third Prize-$1000: Steven Kamenir

Debbie Gilligan, with her daughter Katie, enjoy a break from dancing

Kids of all ages enjoyed moving to the music, including Kalea Zych.

A sincere “thank you!” to everyone who purchased a raffle ticket this year, and also to all the folks who sold them. Your support of the DSAHRC is much appreciated!

Fundraising Co-Chair Bill Van Evera announces the winners of the Big Raffle

Bonnie and Bethany Brechbill share a dance.


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W AT THIS YEAR’S FAMILY DANCE AND SPRING CONFERENCE! Cheers to the Conference Planning Committee! Gayle Farman, Chair Mirola Calupe Vicki Charbonneau Lisa Connally Holly Klingenberg Anne Kuppinger Diane E. Lang Namita Modasra Marietta Schork Velvis

Thanks to our many Conference Volunteers! Bill Bouchard Mirola Calupe Michael Cardella Vicki Charbonneau Lisa Connally Katie Danbury Christopher DeConno Gayle Farman Peter Farman Lindsay Flynn Rose Hargrave

Steve Holmes Katie Kiernan Holly Klingenberg Juergen Klingenberg Anne Kuppinger Katrina LaForest Amy LaGrange Ginny MacPhee Julie Mazone Shannon McMahon Namita Modasra

Hats off to our Conference Sponsors for their generous support! Families Together in NYS, Inc. - Siblings Program DSAHRC Education Committee & Tearing Up the Turf for Timothy and His Friends with Down Syndrome - Plenary Speaker GoldenLane Associates, Inc. - Sibling Program National Business Promotions, Inc. - Conference Gifts Jonathan Grandchamp - Room Signage Hound Dog Graphics - Program Design and Printing Stewart’s Holiday Match

Left: Keynote speaker Carrie Bergeron Desai teaches a captive audience some signs, while (below) Barbara Cardella and Carrie’s mom, Peggy, practice them.

Brie Nobis Mackensie O'Neil Santina Purpura Julie Rogers Pat Ruth Happy Scherer Caroline Temperine Tracy Udle Mariah Velvis Mark Velvis

Thank you Conference Exhibitors! Jones, Wilcenski & Pleat, PLLC Parent to Parent of NYS Pathfinder Village Self- Advocacy Association of NYS Erin Reid Coker, Multimedia Journalist

Dr. Lou Brown makes a point during the Plenary session.

College of St. Rose graduate student Amy LaGrange relaxes with Sidney Vanderbilt during a break in the Self-Advocates conference.


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DSAHRC LAUNCHES “WORDS THAT WALK” SUMMER INSPIRATIONAL WRITING CAMPAIGN! New Program Encourages Students to Pen Inspirational Words In advance of our 2009 Buddy Walk, we are inviting Capital Region students ages 8-14 to participate in the first annual “Words that Walk” Summer Inspirational Writing Campaign supported by Pet Spas of America. Words that Walk invites students to submit short entries that promote acceptance, inclusion, humanity and kindness, as well as inspire fellow students – all key components of the Down Syndrome Aim High Resource Center (DSAHRC) mission. “Words have meaning. They can inspire, uplift and energize,” said Kandi Terry, Buddy Walk event director. “...we want to celebrate the individuality and creativity of our youth, while raising awareness that their individual talents and characteristics make them who they are.” From July 1 through September 1, students are invited to submit one of the following writing pieces that portray the mission of the DSAHRC and the Buddy Walk:  Poem/song lyrics  150-word essay/words of inspiration  Open letter to fellow students/peers The top three winning entries, after review by an independent group of volunteers, will receive the following:  1st Place - $250 and event sportpack/T-shirt  2nd Place - $100 and event t-shirt  3rd Place - $50 and event water bottle Winners will be announced and read at the 2009 Capital Region Buddy Walk on Sunday, October 4, 2009 in Schenectady Central Park. Entries can be submitted at wordsthatwalk@dsahrc.org, faxed to 518-438-2716, or mailed to DSAHRC, 1 Marcus Blvd. Ste. 105, Albany, NY 12205. More details are available at www.capitalregionbuddywalk.org. For questions on the Words that Walk campaign or to receive a flyer to promote the program to family and friends, email Kandi Terry at kterry@dsahrc.org or contact the DSAHRC at (518) 438-1113.

W W W .C A P I T A L R E G I O N B U D D Y W A L K . O R G

There’s Gold in Them There Drawers - Put It To Work! Glennpeter Jewelers is offering a very special fundraiser! On Thursday, June 18 from 6-8 pm, bring in your unwanted or broken gold jewelry to the Glennpeter Diamond Center, 1544 Central Ave. in Colonie. Your gold will be weighed and Glennpeter will write a check to the DSAHRC on your behalf. (Donors will receive a receipt for their tax-deductible gift to the DSAHRC.) Enjoy refreshments while you wait - a fun and easy way to support the our organization! Please RSVP by June 12th to the DSAHRC at (518) 438-1113 or info@dsahrc.org.


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Boardmaker and Writing With Symbols by Ann Nobis Boardmaker and Writing With Symbols are two software programs that the Education Committee at the DSAHRC recently purchased to support the visual learning needs of our challenged learners. This software is available for use at the DSAHRC for parents and any others who would like to use it. Since the software is site licensed, the software needs to be used at the DSAHRC and cannot be taken out. The DSAHRC will offer training classes in the fall. Please look to the next News and Notes or the DSAHRC web site for specific dates. The following is an introduction to Boardmaker and Writing With Symbols and how they might be used. Boardmaker is a program that allows one to type in a word or concept and a display of pictures that could represent the word or concept appear on the screen. Boardmaker is a tool for The DSAHRC will creating symbol-based materials such as communication displays, worksheets and offer training classes flashcards for English language learners, visual schedules and social skills stories, in Boardmaker and books and symbol-supported literacy activities for beginning and pre-readers, Writing With Symbols song and story boards for preschoolers, and general educational and functional this fall! living skills materials for people living with language and learning challenges. Writing With Symbols is a program that is a word processing program like Microsoft Word, but when one writes a sentence, symbols can also appear representing the word/concept appear above each word. Parents and teachers can make picture materials to support emergent readers, direction following, picture schedules, social stories, wordlists specific to an academic or communication need, organization, prediction and more. Writing With Symbols allows individuals who don’t recognize text to write with pictures and it allows text users to have a talking word processing program with a pictorial spell checker. How cool is that! Pictures, illustrations and symbols are all the same because they are all visual; however they are different because pictures and illustrations are more open to interpretation than are symbols. Symbols are more concrete and thus aide in learning, organization and communication for Boardmaker images people who have challenges. Think about the ways typical learners use visuals in their daily lives…the oil light comes on to change the car oil…the female/male symbol on the bathroom doors for foreign speakers…the dog sticker on the calendar to remind one to give the dog flea and tick meds… our planners and calendars in and of themselves… that yellow sticky by the phone… the icons on our cell phones, computers, I-Pods, and Blackberries... weather symbols in the newspaper to see at a glance…the curve on the road sign…the step-by-step visuals included to put a bike together. All of these visuals and more make our lives simpler and easier. Why not use visuals to aid our challenged learners? Also, a visual cue is easier to extinguish than a verbal cue once the learner is proficient at a skill or activity. A visual cue allows for more independence as a symbol can always be available in the absence of a verbal cue. For example… a symbol of a quiet mouth on a desk instead of an aide, teacher, parent, friend saying “be quiet” or “shhhh”.

A computer screen shot from Writing with Symbols

Why not include symbols to aid in prediction and to teach time? One example: putting a symbol of a birthday party on the calendar for next weekend rather than telling and reminding someone it is not today, it is Saturday. One can go to the calendar, show the symbols for today (that can be moved everyday) and the child can see that the “today” symbol is getting closer to the “party” symbol. Why not use an organization visual strip to remind someone what goes into the backpack at a specific time? Using a schedule visual strip can remind a child of what his/ her day will be like and offers them the ability to set up their own schedule for the day. Incoming verbal information can be confusing. Outgoing expression can be difficult to formulate. Visual symbols can support these areas and help a learner to learn and communicate.


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THANK YOU! General Donations Paul & Vicki Charbonneau Elayne Umstead Gloria & David Hart Chad & Christina Rogers David Haut Tracey Udle Canon Kay C. Hotaling Stewarts Foundation Marilyn Lenkowsky Holiday Match Peter & Denise Marsh Barnes & Noble Julie Mazone Awareness Day

Apple Community Pharmacy Lynn & Christopher Baker Kenneth & Donna Barker MaryJane Baumback Benchemark Printing, Inc. Joanne Bleau & Warren Theilemann Patricia & Glenn Bowers Blanche & M L Bradley Tina Brodosian Mary & Kenneth Burditt Capital District Pediatric Cardiology Assoc. Maureen, Robert & Tynan Cardinal Kathleen & Paul DeGuire Thomas DiNapoli Family Ear, Nose & Throat Care, PC

We would like to thank the following individuals, families, and organizations for their generous donations. All gifts are greatly appreciated and assist the DSAHRC in its mission.

In Honor of Brie Nobis Alan Agardi

In Honor of Lillian Mabee Francis & Judy Helion United Way - Bank of America Peter Marsh

In Memory of Geraldine Wager Michael & Lauren Plante Geraldine Rosenburgh James & Elenor Wagar

United Way - GE Don Baldwin Debra Kern Rosemary Vara

In Honor of Dorothy Geerholt Jack & Robin Lancto

In Memory of Thomas Unser Lawrence & Ronda Fein Robert & Gail MacIntosh Eileen & James Fish Patricia Manley Robert & Patricia Godell William & Kathy Manley Kevin Martin & Ralph Hays Eileen Martel William & Mary Jo Hebert John & Barbara McDonald Rosemary Hensley Peter Mikolaitis Daniel & Elaine Hickey Anthony & Kimberly Monaco Karen Brown Johnson Sue Morocco Mary Kerbelis T.D. & P.M. Morris Martha Knuth William & Alice Mutryn Diane E. Lang John & Catherine Myers James Lang Thomas & Katherine Myers Katherine Lawrence Sandra V. Nardoci Reginald & Katherine Less Mary Jo Pardus Julie Liss Wilfred & Lynn Pauquette Daniel & Beth Loewenstein Kathleen Quinn & James Lortsher Pamela & Thomas Lott Susan & Stanley Rainka M.T. & J.K. Lumley Donald & Joan Robichaud

Thank You, Corporate Sponsors, for Supporting the DSAHRC!

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

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

Mary Beth Romanzo Francis & Mary Rourke Saratoga Bridges Margaret Sippel Lora Stage Andrea Taichnar D.L. Tallman Kathy Titshaw & Cheryl Keosky Willard & Mary Towne Terry & Daniel Tyson Grace Unser S & B Unser-Fukino Sarah Unser Harm & Marietta Velvis David & Charlene Welcome Joseph & Margaret Wolf Donna Yamin Maureen Zarnofsky


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Be a Part of the DSAHRC - Use this form to join or to renew your membership today! NAME:

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Would you like a DSAHRC staff member to contact you? ANNUAL DUES: Family – $25.00, Self-Advocates – $10.00, due January 1st each year 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

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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.


DSAHRC at the ValleyCats’ Opening Night Game! Join the

Saturday, June 20th  Joe Bruno Stadium, Troy Picnic at 6:00  Game Time 7:00 Adults: $18  Self-Advocates: $15  Kids under 12: $15 Join your DSAHRC friends at the Tri-City ValleyCats’ season opener! In addition to a great ballgame against the Oneonta Tigers, there’ll be delicious food, a magnetic schedule giveaway, free baseball caps, and a spectacular fireworks display!

Picnic, Free Baseball Caps, Fireworks and More! Your ticket includes dinner at the Top of the Hill Bark and Grill. Located just beyond the left field wall, this unique open air venue offers a breathtaking view of the stadium. Here your picnic will include hamburgers, hot dogs, watermelon, potato or three bean salad, veggie burgers (per request), potato chips, soda and water. You’ll also get a ValleyCats baseball cap! Watch the game from the picnic area or sit in their seats down the third baseline. To order tickets, send your check with the number of requested tickets to the DSAHRC, 1 Marcus Blvd Suite 105, Albany New York 12205 or call (518) 438-1113 and reserve your tickets via credit card RSVP no later than Friday, June 5th - Reserved tickets will be at the stadium Will Call Window on game day - Valley Cats game under the lights at Joe Bruno Stadium

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1 Marcus Blvd., Suite 105 Albany, NY 12205

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News and Notes - April 2009