NDSS National Policy Center Update
 

          Click here for more information.

• The U.S. Department of Human Services announced that the Affordable Care Act will support states in seeing significant new federal support in their efforts to help move Medicaid beneficiaries out of institutions and into their own homes or other community settings. Nationally, $4.3 billion in new funds will help establish and expand community-based alternatives to institutional long term care.
  
  Click here to read the press release. 

Buddy Walk® on Washington 2011 

On February 7 and 8, NDSS brought together 200 advocates from 31 states in Washington D.C. This annual two-day advocacy experience, the Buddy Walk® on Washington, is a powerful way for the Down syndrome community to send a strong message directly to elected officials about important national policy goals, including improvements for education, research, healthcare and more.

The event kicked off with an interactive training, which prepared all participants for their experiences on Capitol Hill and shared new strategies for successful advocacy. The training included detailed information about national policy priorities.

That evening at the reception and award ceremony, NDSS honored Down syndrome leaders and advocates from across the country. Congressman Pete Sessions presented the Advocate of the Year Award to Sarah Brachman, a young woman with Down syndrome whose accomplishments in the area of legislative advocacy include personally recruiting 30 members of Congress to join the Down Syndrome Congressional Caucus. Senator Lautenberg from New Jersey also spoke to the group in honor of Sarah's award and accomplishments. The Massachusetts Down Syndrome Congress was honored for its cutting edge legislative affairs work. Representative Tom Sannicandro from Massachusetts was on hand to personally present the award.

Also honored were Mary McHale from the Omaha Down Syndrome Parents Network for her work in expanding parent support in Nebraska and Donald Bailey of the College Transition Connection for his important contributions to postsecondary education for students with intellectual disabilities.

The next day the group traveled to Capitol Hill where they met privately with the elected officials from their home states. The group came together in the Cannon House Office Building for a lunch briefing where they heard from members of the House who have worked tirelessly to protect the rights and improve the lives of people with Down syndrome. The featured speaker was Congresswoman Cathy McMorris Rodgers. Congressman Pete Sessions, Congressman Gregg Harper and Congressman Chris Van Hollen also spoke to the group.

Madeleine Will, Vice President of Public Policy at NDSS said, "The Buddy Walk on Washington was such an important and successful opportunity for the Down syndrome community to communicate their needs and priorities to decision-makers in Washington D.C. We know, though, that this work doesn't end today, but will continue as each group who came to Washington continues to cultivate their relationship with their members throughout the year."

Remembering Dr. Charles Epstein

Dr. Charles Epstein, medical geneticist and dear friend of the National Down Syndrome Society, passed away on February 15, 2011 at age 77.
 

Charlie has been a wise, creative and generous friend to NDSS for over 30 years.

He was a driving force at the first NDSS research symposium in 1980, which gathered the top thirteen scientists from around the world, in the field of Down syndrome, to help NDSS design its first long term research program. At this time, there were limited private funds, and with the National Institues of Health (NIH) contributing very little to Down syndrome research, Charlie was a visionary in suggesting that NDSS institute a young researcher award. These small awards ($15,000-25,000) were a targeted effort to attract the best and brightest young researchers into an underfunded field at a time in their career that a modest grant could open the doors of major labs.

He served as Chair of the NDSS Science Advisory Board from its creation until 2000. During this time, he oversaw the NDSS young researcher awards. He often selected the subjects for many of the symposia and wrote the symposia forwards, making research more widely available. It is fair to say that he trained an entire generation of researchers who are currently leaders in the study of Down syndrome. He enabled many of their careers with advice, support, and willingness to share not only his data but his ideas and the mice and other reagents that he created.

Charlie was not only a gifted researcher he also was a humanist. Often spending time with parents of children with Down syndrome explaining the importance and promise of research. In his classes he invited individuals with Down syndrome to come and speak to his students, so as doctors they would have an understanding of Down syndrome from a human point of view, not just as a genetic anomaly.

Charlie was one of the founders of modern research about Down syndrome. He formulated the gene dosage hypothesis of Down syndrome, which states that increased expression of proteins encoded by genes on chromosome 21 would lead to the major features of Down syndrome, a hypothesis for which he presented early evidence at a conference in Boston in 1978, less than 20 years after trisomy of chromosome 21 was found to be the cause of Down syndrome. At that same conference he was one of the first to propose that mouse models of Down syndrome could be produced and that they would be useful for studying Down syndrome. He predicted that mouse chromosome regions containing the same genes as are present on human chromosome 21 would be found. He also argued that even mice trisomic for individual genes located on human chromosome 21 would be important for understanding Down syndrome. In the publication of the proceedings of that conference in 1981, Charlie noted that two genes located on human chromosome 21 had been found to be on mouse chromosome 16, a finding immediately suggesting that a region of mouse chromosome 16 would be similar to at least part of human chromosome 21. Indeed, mice trisomic for part of mouse chromosome 16 are now the principle trisomic mice used to study Down syndrome. Two of the most widely used of these, Ts1Cje and Ts2Cje, were created in Charlie's laboratory in 1998 and 2005, respectively. He continued to publish first rate scientific research about Down syndrome until 2010.

Charlie, in collaboration with Dr. Yoram Groner, was also the first to produce transgenic mice containing copies of a single human gene located on chromosome 21, the gene for superoxide dismutase. These mice also continue to be used to this day for important studies of Down syndrome and other human conditions including the aging process, another one of Charlie's enduring scientific interests, and a subject of increasing relevance to individuals with Down syndrome and their families as the life expectancy of people with Down syndrome continues to increase.

Charlie willingly shared the mice created in his laboratory with investigators throughout the world, and there are hundreds of publications using them for studies of Down syndrome. This generosity is an ideal that all scientists should emulate.

Charlie was truly a respected and forward thinking scientist who also had an incredible human touch. NDSS will continue to honor his commitments to Down syndrome research entirely.

Buddy Walk® News

2011 Buddy Walk® Season

NDSS is excited to announce that the Signing Time Foundation will once again be a National Partner for the 2011 Buddy Walk® season and will donate a free Signing Time DVD gift set ($75 value) to every registered Buddy Walk. Last year, they donated over $9,100 worth of Signing Time products to Walks across the country. Stay tuned for more information about this exciting partnership!

Click here for more information about the Signing Time Foundation.
Click here for more information about Signing Time DVDs.

T-Formation has been selected to be the Preferred Vendor of the 2011 Buddy Walk season. We are currently working with them to build the online Buddy Walk store and will providing more information shortly. If you have suggestions of items you would like to see featured, please click here to contact Becky Switalski, National Buddy Walk Director by e-mail or call 877-526-0270.

Click here to learn more about T-Formation.

Reminder: Registration is Open for the 2011 Buddy Walk Season

We are currently accepting registrations for the 2011 Buddy Walk. We are excited to build on the success of last year's season and reach new heights this year.

Once your Walk is registered, you will receive a License Agreement via e-mail that has been customized for your 2011 Walk. When your agreement has been signed and returned to NDSS, your Walk registration will be processed.

Click here to register your Buddy Walk today!

Register Now for the 2011 Buddy Walk® Conference!

The 3rd annual Buddy Walk Conference will take place on Saturday, April 30 from 8:00 am-4:30 p.m. at the beautiful Hilton San Diego Gaslamp Quarter in San Diego, CA.

You won't want to miss this opportunity to share ideas and best practices with Buddy Walk organizers from across the country at this exclusive one-day meeting.

Here is what attendees had to say about the 2010 Buddy Walk Conference:

"I love everyone's enthusiasm and knowing that there are so many of us striving to reach the same goals yet we come from all different demographics!"

"Having representatives from different groups present their success stories is a crucial part of the sessions. It gives others a chance to see what works, what doesn't work and how other groups achieve success."

"What a great meeting of the minds! Thank you so much for your continuous support at the NDSS office!"

Click here for more information on the conference.
Click here to register for the conference.
 

If you have any questions, please click here to e-mail Becky Switalski, National Buddy Walk Director, or call 877-526-0270.

We look forward to seeing you at the Buddy Walk Conference!

This conference is presented by NDSS and co-sponsored by the Down Syndrome Association of San Diego. 

NDSS Spring Luncheon - Save the Date

Join NDSS on Wednesday, April 27 at 583 Park Avenue in New York City to salute some very praiseworthy members of the Down syndrome community.

Author Jagatjoti S. Khalsa set out on an inspired journey to photograph and share the beauty, radiance and extraordinary love of the Down syndrome community. Together, we will celebrate Mr. Khalsa's journey and honor him for his book, I'm Down With You: An Inspired Journey.

The award will be presented by Mr. Khalsa's close friend and a contributor to the book, Sharon Stone. In the book Ms. Stone shares a story about her friend, Jim Burkhardt. "There is a truth to his mind that is based in an undeniable clarity that cannot be broken, stolen, or corrupted. It just is. Purity - solid, clean, durable purity - flows through him and it is wise and deep and hilarious as only the truth can be."
 

As tradition stands, a very deserving young woman will be selected as the recipient of the Melissa Riggio Voices Award. This important award will be presented by award-winning blogger Kelle Hampton of Enjoying the Small Things.

Click here to contact Pamela Sandonato, Vice President of Development, for more information about the NDSS Spring Luncheon.

NDSS 25th Annual Gala

The NDSS 25th Annual Gala took place on February 2, 2011 at Gotham Hall in New York City. To date, this event has raised over $275,000!

Since 1986, NDSS has gathered together its closest friends and supporters to celebrate the NDSS mission, the accomplishments of individuals with Down syndrome and those who contribute to the Down syndrome community. At the 25th Annual Gala, NDSS honored IBM and IBM employees for their commitment to community and volunteerism. Stanley S. Litow, Vice President of Corporate Citizenship & Corporate Affairs and President of the IBM International Foundation accepted the award from NDSS Founder Betsy Goodwin and Self-Advocate Diana Stolfo, whose mother, Joanne, worked for IBM at the time of her birth.

Board member Rob Taishoff and his wife, Laurie Bean Taishoff, of the Taishoff Family Foundation, served as Honorary Co-Chairs of this very special event and Chris Wragge, Co-Anchor of the CBS Early Show, was an enthusiastic Master of Ceremonies. Masterful musician  and Self-Advocate Sujeet Desai dazzled the audience with a violin and clarinet performance during dinner. At the end of a very festive evening, Board member Terry Clancy once again created lasting memories as the auctioneer for the live auction and Self-Advocate Kayla McKeon reminded everyone of the reason for the event with her closing remarks.

Thank you to all of the supporters that braved the ice storm that covered the Northeast to attend the Gala. Your presence was truly appreciated and valued.

Click here to view photos from the event.

Board Member Profile of the Month: John David Hoppe 

We are pleased to introduce John David Hoppe as the NDSS featured board member of the month.

How did you first become involved in the Down syndrome community?

My wife and I have three children. Our youngest, Greg who has Down syndrome, was born in 1990. My first political work with the Down syndrome community was opposing the nomination of Dr. Jocelyn Elders by President Clinton to be Surgeon General of the U.S. She advocated publicly that parents should abort children who had been diagnosed with Down syndrome. I was appalled that anyone could advocate for that position and especially that the Surgeon General of the United States might be a person whose personal belief is that parents should abort children if they were diagnosed with Down syndrome.

How did you become a leader at NDSS? Why did you choose to work with NDSS?

I would say that NDSS actually found me first. I was Chief of Staff to the Senate Majority Leader, Trent Lott, in the summer of 1996. The House of Representatives had just passed, overwhelmingly, a reauthorization of IDEA. Madeleine Will, Stephanie Lee and Patty Smith came to lobby me asking that I work with the Senate Republican leadership and Senator Jim Jeffords and the Republican majority on the Health, Education, Labor and Pensions Committee to halt action on this legislation. I have often said that they tricked me into working on this legislation by encouraging me to help solve one of the important, but smaller, issues that was a matter of dispute in the legislation. After working on this issue, it was clear that there were significant problems with the whole bill. By that time I was hooked. The leadership decided not to continue action on this legislation and it died at the end of the congress. The next year I worked with the House and Senate bipartisan leadership and the White House and the Department of Education to develop a bipartisan IDEA reauthorization that became law in the early summer of 1997. Several years later, after I had retired from government service, Tom O'Neill approached me with a request that I join the board of NDSS. I was proud and honored to be selected. Because of my previous professional experience I have focused most of my attention on government affairs issues and have served as chairman of the government affairs committee.

Since joining NDSS, what have been some of your favorite initiatives to be a part of?
 

Perhaps my most enduring memory of my time on the board will be the work I have done with Madeleine Will, Dr. Brian Skotko, Dr. George Capone and others on developing the booklet on prenatal information for parents who have received a diagnosis of Down syndrome for their child. Working together with ACOG, geneticists, the genetic counselors, and the NDSC, we were able to develop a book that all of these groups agree is the "gold standard" of information for new parents. It will provide invaluable information to thousands and thousands of families in years to come. It is published by Lettercase.

What would you say are some of the critical issues facing people with Down syndrome and their families today?

For each family the problem they face with their child that day or that year is the most critical. Probably because Greg is 20 years old now and will soon be finishing up his schooling, my focus is on the transition from school to a job, to housing to transportation and the many issues we face as he becomes a productive adult. But I think it is critical to the future of all kids with Down syndrome because it is the next mountain we have to climb as a community. We owe so much to the parents, leaders and self-advocates of the previous generations for all they have done to make life better for us. Now it is our job to help make a productive future for all people with Down syndrome.

My Great Story: Stories of the Month

Each month, the two stories with the most votes on the My Great Story site are featured as the Stories of the Month. The votes are reset at the end of each month.

To add your own story, or to vote or comment on others, visit www.ndss.org/stories.