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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.

“faT e a m w o r k ” - From the spring conference to the ll Buddy Walk and beyond, “Teamwork” has brought folks together, empowering us, entertaining us. It’s now a great theme for this special issue of News and Notes! E n j o y ! But first, what better way to start this newsletter than with something about a team that’s been a friend to the DSAHRC the Tri-City ValleyCats! One August evening this summer families enjoyed a great evening of music, food, baseball, and each other...

The DSAHRC was well-represented at the ValleyCats game. Some of the fans included, from left, Coco Connally and her family, Nancy Martinelli and her son, Daniel Goyette, Rachel Nichols and her daughter, Ella Wessels, and Mike Cardella and company. Family came from as far away as the Netherlands to watch the game with DSAHRC Board president Harm Velvis (second row, third from left)

VOLUME 28, NUMBER 4



SEPTEMBER/OCTOBER 2010


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NEWS AND NOTES

SEPTEMBER/OCTOBER 2010

Teamwork! Teamwork! Rah! Rah! Rah! -from the desk of the Editor This issue of News and Notes is all about Teamwork, and boy, does it give an editor lots to work with! Last year, when Teamwork was brought up as the theme upon which to build the annual 2010 DSAHRC conference, it became clear pretty early on that there could be all kinds of great workshop topics, as there were all kinds of teams to feature – medical, education, and sports teams, to name a few. This newsletter, created in large part by readers contributing personal stories, covers those kinds of teams, as well others. On another note, it takes a great team of people to produce a newsletter, so here’s to the most recent version of Team News and Notes – Diane Lang, Debbie Baldwin, Namita Modasra, Lori Draper, and Harm Velvis – for contributing their time and talents on a regular basis to this publication. And here’s to all the teams in the DSAHRC community that bring support and fun to our lives! Speaking of teams.... The front page of the Albany Times-Union recently featured an article about self-advocate Gianna MacPhee, left, a player on the Shaker High School Freshman Girls Soccer Team. Congratulations Gianna! The Acadia Middle School students showed their team spirit by participating in a Hat Day which raised over $150 in honor of Jennifer Sankowski, right, to raise awareness of Down syndrome for the Annual Buddy Walk. Jennifer would like to say “thank you!” to her classmates and the staff at Acadia Middle School for their support.

Looking for Holiday Gift Ideas? Shop at the DSAHRC Store! With a great selection of clothing, including ties, hats, shirts and jackets, jewelry and, of course, the 2011 Aiming High Calendar, you’ll find something for everyone on your list and support the DSAHRC at the same time! Stop by the DSAHRC office or visit the on-line store at www.dsahrc.org

INSIDE THIS ISSUE

Upcoming Events............................... 3 President’s Message..........................4 Aim High Awards Luncheon................4 Self-Advocates Buddy Walk Report....4 The Education Corner.........................5 Teamwork Essays...........................6-7 2010 Buddy Walk Report.................8-9

A variety of Down syndrome awareness jewelry is available, including these two bracelets, as well as the 2011 Aiming High Calendar

Thanks, Skiing, Research.................10 Gala 2010 Report..............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 Staff: Diane E. Lang, Lori Draper, Debbie Baldwin, Namita Modasra, Harm Velvis

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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NEWS AND NOTES

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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 EDUCATION SEMINAR – Monday, November 29, 10 am-Noon and Wednesday, December 1, 6-8 pm – Ellen Burns and Nancy Hampton from the Early Childhood Direction Center present Introduction to Early Intervention Program and Services. See page 5 for more details. DSAHRC BOARD MEETING – Monday, December 6 – 6:30 pm – Open to everyone! DSAHRC EDUCATION SEMINAR – Tuesday, December 14, 6-8 pm and Wednesday, December 15, 10 am-Noon – Ellen Burns and Nancy Hampton from the Early Childhood Direction Center present Transition from Early Intervention to Preschool Special Education Services. See page 5 for more information. DSAHRC BOARD MEETING – Monday, January 3 – 6:30 pm – Everyone is invited and encouraged to attend! DSAHRC EDUCATION SEMINAR – Wednesday, January 19, 10 amNoon and Thursday, January 20, 6-8 pm – Ellen Burns and Nancy Hampton from the Early Childhood Direction Center present Preschool Special Education Services. See page 5 for details.

Save the Date... Annual DSAHRC Family Dance, Friday, April 1, 2011, with the return of everyone’s favorite, Flame the Band, followed the next day, Saturday, April 2, by the annual spring conference, Beyond Our Wildest Dreams, with the exciting theme of “Lights, Camera, Action!” at the Holiday Inn, Albany!

...and look for more information to come

Coming Soon! The DSAHRC is pleased to present the

AIM HIGH AWARDS LUNCHEON! Food, friends, and the much deserved recognition of people in our community who have made a difference in the lives of individuals with Down syndrome! Look for more information coming your way soon!

on the Self-Advocates Group’s activities in 2011, including seminars on Health and Nutrition in March! 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 8th 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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SEPTEMBER/OCTOBER 2010

A Message From the President, Harm Velvis... “ Teamwork!” The very existence of the DSAHRC, its success, its programming, its fundraising, its everything, is because of teamwork. Teamwork is what makes things happen at every level within the organization. The Board is a team: fourteen people who at first don’t know each other well, fourteen people with very different backgrounds and experiences who get together on a monthly basis to give direction to the organization, set policies, discuss issues, and come to a consensus. The DSAHRC Staff is a team: five people, each with specific responsibilities and assignments, five people who work closely together on a daily basis to serve the Teamwork is what membership and who, as a team, give leadership to the organization. Each Committee is makes things happen a team: groups of people who work together in teams to organize specific events. at every level within

the organization.

It is all pretty amazing when you think about it. At first there was no Aim High. Then people got together with a vision and created a support organization. At first there was no Resource Center. Then people got together, again with a vision, raised money, and hired a staff, rented an office, and developed increasingly expanding programming. When organizing an event, at first there is no such event, and people work together to create an event. The recent Gala comes to mind, at first there was an idea, no blueprint, nothing at all really, and people worked together and organized an amazing event. All of this and much more because of team effort. In my experience, people work very well together to achieve shared goals. Everyone involved with the DSAHRC wants the organization to be successful in achieving its mission and goals. Everyone involved with specific events wants such events to be successful. Naturally, people can disagree on issues such as budgets, overall organizational direction, and priorities. And part of teamwork is to discuss issues and reach a consensus. Although the best interests of the people served are of foremost importance, teamwork has important secondary benefits. People, strangers at first, get to know each other and often become friends. Over the years, going back 30 years when Aim High first started, many life-time friendships have been formed. Teamwork makes it all happen. I have been, and continue to be, very privileged to be part of wonderful teams of people on the Board. The teams that put together this year’s Conference, Buddy Walk, Gala, and Educational Programming can all be very proud of their achievements. The organization can be very proud of its programming and achievements. Sure, more can and needs to be done. Sure, there is always room for improvement. For that we need all of you to be involved and become part of the Team.

Aim High Awards Luncheon! As mentioned on page 3, a luncheon is being planned for early 2011, and one of the main attractions will be the presentation of the Aim High Awards. Back by popular demand, these awards recognize folks in our community who have made a difference in the lives of people living with Down syndrome. The Aim High Self-Advocacy Award will also be presented, honoring an individual, or individuals, with Down syndrome for their outstanding achievments and for being an inspiration to others. Award criteria can be found on the DSAHRC website. Nominations are welcome from all DSAHRC members. To nominate an individual or “team”, please send a written one-page statement describing why this person, or persons, should be chosen for the Awards. Letters may be sent electronically to info@dsahrc.org or by mail to the attention of the Awards Committee at the DSAHRC. Nominations must be received by December 8, 2010. We hope you’ll be part of the celebration as our organization thanks these special people at the upcoming Aim High Awards Luncheon!

Congratulations Self-Advocates... ...for raising over $2000 in the first ever Buddy Walk SelfAdvocates Challenge! Pictured at right are some of the participants writing letters to friends and family asking for their support for this fundraiser. The Self-Advocates have earned a special activity that will be revealed soon - in the meantime, they’ve been busy attending Job Success Seminars at the DSAHRC and having fun at the Blast from the Past Rockin’ Dance Party. Plans are being made for 2011, so stay tuned!


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The Education Corner with Namita Modasra, DSAHRC Education Coordinator

Dear Families, I want to share my personal experience with attending training and information seminars. When my daughter was very young, maybe two or three years old, I did not attend any of them. There were different factors affecting my inability to attend, one of them being time and maybe the other one was the thought that this does not pertain to me or not knowing the value of it. Of course, it became harder and harder to advocate for my daughter as she moved from Early Intervention to Preschool Special Education. I started attending the seminars and then I attended some more and then some more and I became what they sometimes refer to as a “seminar junkie”!! I guess what I am trying to say is these information seminars have been crucial in understanding the different systems and how these programs benefit our children. Along with this also comes that fun part of learning a whole new language of Special Education Acronyms! I bet you did not know this language existed! To get you started on these special ABC’s, here is a partial list that will be helpful to know - look for the rest of the list in the next issue of News and Notes!

Special Education Acronyms ADA- Americans with Disabilities Act ADL- Activities of Daily Living AIS- Academic Intervention Services AT- Assistive Technology BIP- Behavior Intervention Plan CAP- Client Assistance Program CBVH- Commission for the Blind and Visually Handicapped CSE & (CSPE)- Committee on (Preschool) Special Education CQCAPD- Commission on Quality of Care and Advocacy for Persons with Disabilities DDSO- Developmental Disabilities Services Office DME- Durable Medical Equipment EI- Early Intervention

ESY- Extended School Year FAPE- Free Appropriate Public Education FBA- Functional Behavioral Assessment FERPA-Family Educational Rights and Privacy Act IDEA- Individuals with Disabilities Education Act IEE- Independent Educational Evaluation IDEIA- Individuals with Disabilities Education Improvement Act IEP- Individualized Education Program ILC- Individual Living Center IPE- Individual Plan for Employment IQ- Intelligence Quotient IRA- Individual Residential Alternative ...to be continued!

Education Seminars Join us for a series of seminars on the Early Intervention Program and Related Transitions! These seminars will be presented by Ellen Burns and Nancy Hampton from the Early Childhood Direction Center and will be held at the DSAHRC. For your convenience, each seminar is scheduled to take place in both a morning and an evening time slot. Introduction to Early Intervention Program and Services Monday, November 29, 10 am-Noon and Wednesday, December 1, 6-8 pm; register by November 24 Transition from Early Intervention to Preschool Special Education Services Tuesday, December 14, 6-8 pm and Wednesday, December 15, 10 am-Noon; register by December 9 Preschool Special Education Services Wednesday, January 19, 10 am-Noon and Thursday, January 20, 6-8 pm; register by January 14 Transition from Preschool to School Age Special Education Services Tuesday, February 15, 10 am-Noon and Thursday, February 17, 6-8 pm; register by February 10 Registration is required! Please contact the DSAHRC (info@dsahrc.org or 518-438-1113) and be sure to provide your name, phone number and/or an email address when you register. It is very important that you register and provide contact information in case we need to notify you of any changes or cancellation of a seminar.

Visual Symbols, Tools and Strategies: Boardmaker and Communicate: Symwriter presented by Ann Nobis and Patrice VanHeusen, will be offered in the new year. Two workshops will help you 1) understand why using visual symbols improves one’s ability to learn, retain and participate; 2) understand how to use Boardmaker and Communicate: Symwriter; and 3) make and take a visual that will support a specific goal you have for your child. The classes take place on Saturday mornings, January 22 and 29, from 9:00-Noon, and are limited to nine participants, so register now by contacting the DSAHRC at info@dsahrc.org or (518) 438-1113.


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SEPTEMBER/OCTOBER 2010

Teamwork ...

families share their stories about their personal teams...

Team Kathleen The Grace Family has had the privilege of being a part of many teams. We did not appoint ourselves a team captain, but rather, we were assigned a team captain. On March 4, 1997 our “captain” was born. To our surprise she was born with a little something extra, an extra chromosome which meant she had Down syndrome. She brought to our family a whole new game plan, one that actually slowed us down and helped us to celebrate things along the way that we would not have noticed going at the pace we were used to. We had become a team that cheered more than the Dallas Cowboys Cheerleaders at the Super Bowl! I guess we were Kathleen’s first “team members”: her dad, sister Kelly, brother Patrick, and myself. Next she recruited a team of therapists. The playing field was our home, the team members, a physical therapist, an occupational therapist, a speech therapist, and a special education teacher. It was Kathleen who kept us working together towards a goal. Like any good captain she set an example of strong determination, a positive attitude, and good sportsmanship. She conveyed these qualities by working hard, always smiling even when she was working her hardest, and showing everyone that it isn’t about how fast you run, how high you jump, how strong you are or even if you win or lose, it’s about “being in the game” and doing your personal best. Like good teammates we cheered each other on, patted each other on the back, and showed great respect for our “team captain”. At five years old Kathleen was thrown a “curveball”, something that surprised us even more than the Down syndrome. We were told she had suffered a stroke. We couldn’t believe a five year old child could have a stroke - that was something only older people experienced! She was diagnosed with moyamoya disease and would continue to have strokes without Patrick and Kathleen surgery to treat it. This is where we recruited more team members. This time it was a team of Grace medical professionals, the playing fields were hospitals and doctors offices. This was definently a “travel team”! We traveled from Albany (Albany Medical Center), to Schenectady (Sunnyview Rehabilitation Hospital), to Springfield (Shriner’s Hospital), and to Boston (Boston Children’s Hospital). The team members were a Pediatrician, Neurologist, Neurosurgeon, Physiatrist, Orthotist, Orthopedic, and an Urologist. This was a Super Bowl squad! Kathleen had survived a series of strokes and surgeries, so we geared up for a marathon. With all team members working together we began rehabilitation. Kathleen would need to relearn everything she had worked so hard to learn the first time. She continued to convey all the attributes a great team captain should. With the help of her teammates, which had become a long list of doctors and therapists, she was determined to get back on her feet and prove that she was still the team captain and could play under pressure. During this time we needed to add our next set of teammates - the educational team - a classroom teacher, special education teacher, and teaching assistant. She was to start kindergarten in a wheelchair and with no speech. But this didn’t matter to her or her peers. Kathleen was happiest with her peers and they even joined her “team” and challenged her and followed her example of hard work and determination. She was now the driving force of a team of therapists, medical professionals and educators, not to mention her family and peers. I believe she was appointed team captain because she’s the most driven and determined person I know. “I can’t” has never been in her vocabulary. She seemed to come into this world knowing that “you can” if you just work at it. A team is defined as a “group of people working together towards a common goal”; other definitions which fit our team are, “the whole is greater than the sum of its parts”, and “a group of people with a full set of complimentary skills”. These definitions certainly describe our team and all its members. I believe the title of team captain is not just an honorary title for Kathleen. By definition she is certainly our captain. A captain can be quiet and lead by example, should have full respect of all team members, and will guide what the goals of the team will be. Kathleen is not just my team captain, she’s my hero. - Mary Grace, mother of Kathleen

Jonathan’s Team I had been thinking about moving my son Jonathan into a residence for a while now, as he’s very attached to me and needs to be around other people and acquire more social skills and independence. I was fortunate to have the Alternative Living Group step in and assist us with Jonathan’s move into a wonderful home in Schenectady, about ten minutes from me. I want to acknowledge all the wonderful staff in this organization as this move has not been without difficulty. My son Jonathan has always wanted to live with me but I knew it was time to take this step and hope for the best. He has not been willing to participate with activities or chores, and just be more socialable. continued on next page


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Team Hope HOPE: One of the definitions in Webster’s Dictionary is, “To want or wish for something with a confident expectation.” As the family of 12 year old Sarah, who has Down syndrome (Ds), this word has been our focus. Looking back, we are grateful for the vast number of people we have been blessed to have on our “team” at different times over the years. From the many parents throughout the DSAHRC community, as well as those locally (who also have kids with Ds), to family, friends, and the professionals ... doctors, nurses, advocates, respite providers, therapists, teachers, aides (who patiently spent endless time on repetition and rejoiced along with us when Sarah made progress!) ... the list goes on! They have all provided time, care or valuable information to help us along this path, giving us HOPE. Often, it is one sentence, an act of kindness, or a procedure that we recall. Following are just a few examples. Some names will be familiar to folks in the Capital Region.

Sarah Alley and Dr. Douglas Cannon Sarah and her sister, Jessica

At about 19 weeks of gestation, Dr. Eric Spooner, MD of Capital District Pediatric Cardiology, performed an echocardiogram on our baby in utero, after an ultrasound revealed a large “hole” in her heart. During the echo, he confirmed that she had an endocardial cushion defect (also called an A/V canal defect) which could be repaired with surgery sometime after birth. Harder, though, was hearing the news that this would raise the percentage of the chance that she would have Down syndrome. Shock overwhelmed me. I felt like time stopped! I stared over at my husband. Neither of us knew anything about Down syndrome. Dr. Spooner quickly went on to say that although there was no way to know what level a child would be at, his associate, Dr. Harm Velvis, had a daughter with Ds who was doing well. Dr. Velvis would be willing to speak with us if we wanted to at some point. Looking back, there was our first glimpse of it ... HOPE.

We chose not to confirm a diagnosis of Ds with amniocentesis. The remaining 20 weeks of pregnancy and bedrest were difficult emotionally. However, we had excellent pre-natal care both in Cooperstown and Albany. On delivery day, members on the delivery room team at Albany Medical Center were all great. Even though they were quite sure our baby had Ds (pending the blood test), our nurse was wonderful, and reminded us, “She has ten fingers and ten toes and she is a beautiful baby, Mom and Dad!” ... HOPE. The team also made sure we received a new parent packet on Ds provided by the Aim High parent support group, which was chock full of important information and reminded us to enjoy our baby! During the two days we were at AMC, a couple with a newborn across the hall introduced us to their handsome 18 month old son who was happily toddling across their room and just happened to have Down syndrome! They had many kind words of reassurance for us... HOPE. At Sarah’s first new baby pediatric visit, her pediatrician, Douglas Cannon, MD, Bassett Healthcare, Cooperstown said to me “the best thing you can do is treat her normal.” Good advice. He, of course, has said many other wise things and given excellent care in the years since then! The whole pediatric department has been great. More HOPE. We are also grateful for the excellence in surgeries performed by Dr. Lewis Britton, MD, Albany Medical Center, who repaired Sarah’s heart; Dr. John Simon, MD, Lion’s Eye Institute, Albany, who straightened her eyes; and Dr. Jason Mouzakes, MD, University ENT, Albany, who performed surgery to remove her tonsils and adenoids and is ALWAYS diligent about the issue of protecting our kids’ necks during surgery. All have changed the course of her health and contributed to our hope. There are many more stories of people who shared positive words or provided excellent care. These people humbly say they are “just doing their job”, but from the perspective of parents of a child with Ds, they are part of our team of HOPE ... for now and the future! - Laura Alley, mother of Sarah Elizabeth

Jonathan’s Team

continued...

The staff has bent over backwards trying to get him to understand that this is his new home and they will be there for him. He has tried to escape many times and they have taken the necessary precautions for his safety. We’re working together to tackle Jonathan’s apprehension in this new transition and we are in communication daily. The staff has made sure he has been able to continue with the same day program he has been in without any change in routine and if he shows any kind of negative behavior they step in and handle it and try not to tell me everything little thing he tries. Again, I would just like to share how wonderful the staff at Alternative Living Group has been during this difficult transition in our lives and I will always be indebted to them for all their efforts and support. - Pat Ruth, Jonathan’s mom


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SEPTEMBER/OCTOBER 2010

Teams - lots of them! - were the big story this

year at the

2010 Buddy Walk!

While they contributed to the success of this fundraiser, they also helped make it a day of celebration of our community. Thanks to everyone who made this such a super event! Buddy Walk By the Numbers: 44 Teams Participated  Over 1,000 Attendees More Than $50,000 was Raised

Team with the Most Registered Members: Emmagizers (49)

Teams Raising the Most Money: (1) Jack Hughston’s Team (2) Team Eden (3) Alabu (4) Emmagizers (5) Team Coco

Katie Pray created a giant chalk Buddy Walk logo (left)

The Self-Advocates Buddy Walk Team

Corporate Sponsors

In-Kind Sponsors

Target NYSCOPBA 1st National Bank of Scotia Hudson Mohawk Chapter of the American Truck Historical Society Capital Care Pediatrics Cooney Orthodontics County Waste Greenberg Traurig

A Complete Party Rentals Adirondack Beverages BJ’s Wholesale Club Freihofer’s Friends of the Massaroni Family Hannaford Honkers the Clown Price Chopper Stewart’s Shops The Spotted Zebra

Thank you!

Team Izzy B (left) was just one of many Buddy Walk teams Buddy Walk Committee: (below) Karen Bobarakis, Abbie Kenific, Lisa Kenific, Jenn Connally, Buddy Walk Chairperson Lisa Connally, Julie Koenig, and (right) Douglas Rogers

A Big Thanks goes to: John Kenific for being the official Buddy Walk team photographer; Lansdowne Construction for preparing all that great Buddy Walk food; the U.S. Army for bringing the interactive HumVee; Eric Mason for donating and serving those much-loved sno-cones; and to All the volunteers who helped set up, handle registration, serve food and help with all the other countless things that made the day a success.

And Special Thanks to: the Buddy Walk Committee for making the event such a success We couldn't have done it without their creative ideas, countless hours of planning, and their endless enthusiasm!


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Jack Hughston’s Buddy Walk Team - a little bit on how it came to be For our family’s first Buddy Walk,

I created a team online and sent out an email to the friends and family that Jack Hughston has gently touched or wholeheartedly slammed into since he arrived almost 2½ years ago. I also emailed a handful of other friends and family who have yet to meet the magnetic little fellow beyond photos and stories shared by his proud parents. I set a fundraising goal of $250, a number I chose because Jack Hughston has received a grant from the DSAHRC for the past two years for this amount; a grant we are grateful to have received. Also, I thought it would be a reasonable amount to raise, especially since I planned to ask for a modest amount from each person: $5. Since there were about 101 people on Jack Hughston’s initial email list,* I thought that if at least 50% of the people made a donation we would meet our goal and possibly a little more. My greatest hope in doing this was to get the word out and to get people involved; the money was less important. Still, I hesitated sending the email out, especially to the people that Reid and I had not been in touch with in recent months, or even years. I was worried about “‘bothering” people with our cause. Minutes after I sent the email out, however, a donation for $500 came in! I thought there might have been a mistake with the numbers, but when I saw the name of the contributor, I knew it was not a mistake. Though I had not seen the Canuck (nickname for a Canadian used affectionately here) in years, he was as supportive and generous as ever. Thanks to this first positive response, I knew I had made the right decision to send out the Buddy Walk email. Moments later, a second donation came in from Beijing, China. This was another exciting moment as I realized, if someone was able to make an online donation from Beijing, contributions could get through from anywhere. And soon enough, the donations, large and small (many, many $5 & $10 donations) came in from Canada, Australia, Colombia, England, and all over the United States – nearly everyone I emailed contributed something to Jack Hughston’s Team. Amazingly, there are still people wanting to make donations, long after the Buddy Walk of October 3rd. As of this moment, it looks like our team will have raised $5,095!! This amount includes a surprise matching grant of $1,000 from an incredible foundation, a result of another super generous and supportive person I have not seen in far too long. I am still shocked and moved by all the support and participation. Thank you, Thank you, Thank you. I would also like to mention that I was inspired by the efforts of another family in our TriplePlay Group who impressed me with their terrific efforts recruiting a huge team to participate in the walk last year. Thank you, Team Coco, for inspiring our family to join the Buddy Walk! Jack Hughston Waring - Kirin Buckley (Reid Waring & Jack Hughston Waring) at his first Buddy Walk *I use “initial” because as the days passed, friends and family passed my email on to their friends and family who made donations, and even created satellite teams, most notably a team AND a small Buddy Walk organized by a highly motivated 13 year old young lady in Pawling, NY. In only a few short days she raised $229 for Jack Hughston’s Pawling Team all on her own. Impressive! Donations came in from: Alford, MA, Ashley Falls, MA, Baltimore, MD, Beijing, CHINA, Bennington, VT, Brooklyn, NY, Burlingame, CA, Calgary, Alberta, CANADA, Catskill, NY, Cambridge, MA, Chatham, NY, Chicago, IL, Claverack, NY, COLOMBIA, Denver, CO, Dundas, Ontario, CANADA, Elizaville, NY, Garrison, NY, Ghent, NY, Glenmont, NY, Harlemville, NY, Hong Kong, CHINA, Hudson, NY, Jacksonville, FL, Kew Gardens, NY, Lake Placid, NY, London, ENGLAND, Lowell, MA, Methuen, MA, Montreal, Quebec, CANADA, New York City, NY, Newburyport, MA, Pawling, NY, Phoenixville, PA, Philmont, NY, Portland, OR, Potts Point, Sydney, AUSTRALIA, Providence, RI, Ronkonkoma, NY, Saint James, NY, Salem, NH, Santa Fe, NM, Santa Rosa, CA, Seattle, WA, South Egremont, MA, Sunnydale, NY, Tigard, OR, Toronto, Ontario, CANADA, Troy, NY, Whistler, British Columbia, CANADA, Wiscasset, ME, Yonkers, NY and a few other towns and cities.

Jack Hughston’s Pawling, NY Team

Buddy Walk 2010


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NEWS AND NOTES

THANK YOU!

SEPTEMBER/OCTOBER 2010

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 Memory of Jennifer Paris

Corey Ausfeld Joy & William Bassett Eileen Daugherty John & Anna Dingley Polly Donlon Frances Flynn & Margaret Williams Mark Gross

Arthur & Ellen Hilt Margo Janack George & Gail Jorgensen Mark & Colleen Knapik James & Terry Kois Delores Long & Holly Talbot Overhead Door Company of Albany, Inc.

In celebration of Braden Massaroni’s birthday Rosemary Centi Louise Durante Gina & Stephen Lanchanski Massaroni Builders, LLC Heather Martin Casey & Stacey McClennon Santina Pede Peter & Stacey Sweeney Gayalyn & Wallace Wojtowicz

Rhonda & Raymond Reisner Research Foundation State University of New York Vivian Rubin Stephen & Sara Ryan Shirley Testo & Carol Browne Katherine Underwood

In Memory of Tom Unser’s 21st birthday Timothy & Bonnie Unser In Honor of Her Grandson, Michael Lobb Michele Lobb General Donations Salvatore & Anna Beltrone Family Foundation Standish Family Fund Grant Community Foundation for the Greater Capital Region

Interested in Skiing?

Attention Parents!

Douglas Rogers, DSAHRC Board Member, Self-Advocate and Downhill Skier writes...

If you have a child with Down syndrome, age 5-18, you are invited and encouraged to participate in a dissertation research study titled

We encourage anyone who would like to attend the Adaptive Sports Foundation (AFS) Winter Program at Windham Mountain to sign up! We will be glad to reach out to anyone interested in joining for the 2010-11 season - we need about 25 students for the Slider Program. To learn more, visit www.windhammountain.com/lessons/adaptive-programs/

Parent-Rated Strengths of Children and Adolescents with Down Syndrome You are asked to complete a rating scale on your child’s strengths and a short questionnaire; the whole process should take no longer than 15 minutes total. Your help will be much appreciated! Please contact Nicole Keenan at nb614272@albany.edu to participate or for more information. Note: Nicole has an adult brother who has Down syndrome and attended this year’s DSAHRC Buddy Walk!

Thank You, Corporate Sponsors, for Supporting the DSAHRC!

Schoolhouse Road Pediatric Associates, Inc. of Northeastern New York, LLP 35 Hackett Blvd., Albany, NY 12208 (518) 262-5575

81 Schoolhouse Rd., Albany, NY (518) 456-1211


SEPTEMBER/OCTOBER 2010

NEWS AND NOTES

PAGE 11

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BOARD OF DIRECTORS

DSAHRC OFFICE INFO

President . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Harm Velvis Vice-President . . . . . . . . . . . . . . . . . . . . . . .Gayle Farman Secretary . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Mary Grace Treasurer . . . . . . . . . . . . . . . . . . . . . . . .Joyce Sankowski Administrative/Membership Chair . . . . . . . . . .Mary Grace Conference Co-Chairs . . . . . . . . . . . . . . . . .Lisa Connally . . . . . . . . . . . . . . . .Michelle Moorhead Education Chair . . . . . . . . . . . . . . . . . .Virginia MacPhee Events Chair . . . . . . . . . . . . . . . . . . . . .Lisa Connally Fundraising Co-Chairs . . . . . . . . . . . . . . .Brian Temperine . . . . . . . . . . . . . . . .Mike Massaroni Legislative Chair . . .Kimberly Strauchon Verner, Esq. Self-Advocates Co-Chairs . . . . . . . . . . . . .Patrick Morgan . . . . . . . . . . . . . .Brianne Nobis . . . . . . . . . . . . .Rose Hargrave Members-at-Large . . . . . . . . . . . . .Douglas R. Miller . . . . . . . . . . . . . .Douglas Rogers . . . . . . . . . . . . . . . . . . . .Dave Yule

We’re open Monday-Friday, 8:00-4:00, but sometimes our work takes us out of the office – kindly call before coming! Other hours available by appointment – please come see us!

Currently all Officers and Board members, with two exceptions, either have a family member with Down syndrome or they themselves have Down syndrome. The ages of our children range from infancy through adulthood. 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.

1 Marcus Boulevard, Suite 105, Albany, NY 12205 Phone: (518) 438-1113; Fax: (518) 438-2716 Website: www.dsahrc.org Executive Director: Diane E. Lang, dlang@dsahrc.org Administrative Assistant: Debbie Baldwin,dbaldwin@dsahrc.org Events Coordinator: Julie Koenig, jkoenig@dsahrc.org Education Coordinator: Namita Modasra, nmodasra@dsahrc.org Publications: 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.

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. Would you like 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.


Lastly, a great team

Left: Chairman of the Gala Committee, Bill Van Evera, with DSAHRC Vice-President Gayle Farman and Board member Ginny MacPhee

of people put together the DSAHRC’s first gala this October!

The evening was a tremendous success, with over 150 attendees enjoying the fabulous music of The Swing Docs, wonderful food by Classé Catering, and Casino Gaming for fantastic prizes. A good time was had by all who attended!

A big thanks to another great team, our Corporate Sponsors:

Below: Fred Hinrichsen, Mistress of Ceremonies Ann Hughes, DSAHRC Events Coordinator Julie Koenig and Mike Koenig

Below: Rob and Darlene Sheffer, Mark and Marianne Perry, Ann and Andy Rose, Brian and Laura Collier

Albany Medical Center Capital District Pediatric Cardiology Associates, PC Carmody, Leyden & Yule, LLP Jones, Wilcenski & Pleat, FLLC Lavelle & Finn, Attorneys at Law The Massaroni Family MassMutual Financial Group Nemer Chrysler Jeep Dodge Pierro Law Group, LLC Toyota of Clifton Park William Van Evera, CLU, ChFC

Photos by Joseph Putrock of the Albany Times-Union

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!

Or Current Resident 1 Marcus Blvd., Suite 105 Albany, NY 12205 Permit No. 759 Albany, NY

US POSTAGE PAID Non-Profit Org.


News & Notes - Sept/Oct 2010