E-NEWSLETTER
July 10, 2015
Featured Stories

Countdown to the 21st Annual NDSS NYC Buddy Walk� - September 19th in Times Square and Central Park 

 

The 21st Annual NDSS NYC Buddy Walk� will take place on Saturday, September 19, 2015 to honor and celebrate individuals with Down syndrome from across the country. Our NYC Buddy Walk�, like the over 275 walks across the country, raises awareness and funds for programs that benefit people with Down syndrome and their families.  

Register for the 2015 NDSS Buddy Walk� in New York City here.


Show Your Support - Get Your Down Syndrome Awareness Ties by Vineyard Vines Today! 

 

Vineyard Vines and NDSS have teamed up to create Down Syndrome Awareness Ties, offered in four colors - red, royal, yellow and navy!

Every tie purchased helps NDSS further our mission to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. All proceeds will go toward funding the four programs of NDSS: Advocacy, Community Support, National Buddy Walk Program and Public Awareness.


 
Resources
Webinar Series

 

Each month, NDSS provides a free educational webinar to anyone who is interested in learning more about various topics relating to Down syndrome, including health, education, advocacy, family life and research. This month's topic is:

 

Including a Self-Advocate on Your Board of Directors

Thursday, August 27 at 1:00 PM Eastern Time
 

Join NDSS, as we present self-advocate and Joseph P. Kennedy Foundation Fellow David Egan, as he presents the webinar, Including a Self-Advocate on Your Board of Directors. David will speak from his wealth of experience, providing tips to organizations and sharing his successes.

 

READ MORE


Scholar Spotlight

Congratulations to the 2015 O'Neill Tabani Enrichment Funds Recipients!
 

Congratulations to the recipients of the 2015 O'Neill Tabani Enrichment Fund! Our committee was impressed with the accomplishments and goals of everyone who applied. This year, a record twenty-one outstanding students who have Down syndrome were awarded grants to support their postsecondary or enrichment courses. 
 
 

MEET THEM HERE


 

Ways to Give
Fundraiser Focus

A Special Thanks to Mike Stavropoulos for Spearheading Our New T-21 Awareness Magnets


Mike Stavropoulos reached out to NDSS requesting assistance with a class project at the University of Mississippi. The project was to have a social entrepreneur project to benefit a charitable organization. Mike and his team (Candie L. Simmons, Mallory McCormack and Farah Elassad) had to open up a web store, offer products or services, with all profits going to a selected charity. He chose NDSS because he just had a baby, Hedley, with Down syndrome. For Mike, it was the natural thing to do to raise money for a national Down syndrome organization. He decided to create an e-store and sell T-21 Magnets. With social media assistance, Mike and his team were able to raise over $3,600! The team achieved more revenue, more profits and the highest web activity than any other team in their class. The amazing team finished with the second highest revenue in the history of the class project. 

 

NDSS Your Way Goes to College - NDSS is looking for Fraternities and Sororities to Support NDSS 


NDSS Your Way is adding another category to choose from when creating an online fundraiser. Compete, Create and Celebrate are now being joined by a category geared for colleges and university students. NDSS Your Way is adding another category to choose from when creating an online fundraiser. Compete, Create and Celebrate are now being joined by a category geared for colleges and university students.

NDSS On Campus is for students in college who would like to fundraise on behalf of NDSS. The fundraiser can be a specific event or an online campaign. Examples of on campus fundraisers are, but not limited to: sports tournaments, bar parties, food cook-offs or tastings, dance marathon, variety show, school activity, or a social media campaign.

 


 

Donor Spotlight

 

ACE Cash Express Supports NDSS Through its May "Give a Little Campaign"

 

For the second year in a row, ACE Cash Express has chosen NDSS as one of their charities for its May Give A Little fundraising campaign, thanks to Regional Vice President of ACE and new NDSS board member, Chris Brooks.  Last year, ACE raised close to $35,000 for NDSS, and this year, during the month of May raised more than $68,000 from store donations collected in their Mid-Atlantic and Northeast regional locations to directly benefit NDSS and people with Down syndrome. Donations are made possible thanks to ACE's customers, employees and funds provided by the corporate-giving program. Chris and ACE's dedication helps NDSS fulfill our mission to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.  


NDSS hosts several national events throughout the year. Our events are growing and we are pleased to welcome people from across the country as our attendees. Please consider joining us at one of our upcoming events.
NDSS' 11th Annual Caring with Congress in Washington, DC - July 15, 2015
 
It's almost here! NDSS is excited to host our 11th annual CARING with Congress event in 
Washington, D.C. on July 15, 2015 at Eastern Market's North Hall. Special guests include: Congressman Pete Sessions (R-TX), Congressman Chris Van Hollen (D-MD), Congresswoman Cathy McMorris Rodgers (R-WA) and Delegate Eleanor Holmes Norton (D-DC) along with almost 20 Members of Congress. CARING with Congress raises funds to support our NDSS Research Innovation & Discovery Fund (RIDF).

The goal of the Fund is to improve the health outcomes, increase the quality and access to care, and develop new therapies and treatments for all people with Down syndrome. The Fund supports research and clinical infrastructure needs for the Down syndrome scientific and research community by funding strategic priorities and initiatives that help advance the biomedical research field. 

To learn more about our event and how you can get involved, please visit the NDSS website



NDSS 21st Annual NYC Buddy Walk - September 19, 2015
 

The 21st Annual NYC Buddy Walk� will take place on Saturday, September 19, 2015 to honor and celebrate individuals with Down syndrome in our communities. This event raises awareness and funds for programs that benefit people with Down syndrome and their families.  


Register for the 2015 NDSS Buddy Walk� in New York City here.

 

NDSS 30th Annual Gala & Auction in New York City - March 10, 2016
 
Save the date for NDSS' 30th Annual Gala & Auction which will be held on March 10, 2016 at B.B. King's Blues Club in New York City. Our Annual Gala & Auction is a celebration of the NDSS mission, the accomplishments of individuals with Down syndrome and those who contribute to the Down syndrome community.  

For more information, please contact NDSS Senior Director of Special Events, Madeline Alemar, at [email protected].


My Great Story

My Great Story, the largest NDSS public awareness campaign, seeks to ignite a new way of thinking about people with Down syndrome by sharing stories written by and about them. Self-advocates and their family members, friends, coworkers, teachers, coaches, therapists and everyone with a connection to someone with Down syndrome are encouraged to share their stories!

 


My Great Story of the Month
Each month, the story with the most votes in the My Great Story collection is featured in this section and on the NDSS social media pages. Visit www.ndss.org/stories to check out the campaign and click the submit bookmark to share your story!

Mom's Tears, My Sister
By Mary Ann Gibbons, Washington, DC

Kathleen is in my corner no matter what. I love the fact that she made my husband pass muster before we married. She told him early on, "If you think you want to marry my sister, you must get my permission first before seeing Pop." Before asking Dad for my hand, Michael sought Kathleen first. Her comments were perfect, "You know nothing comes between sisters. Are you going to treat my sister right? Are you going to be good to her?" When he passed her inquisition, she told him, "OK, you have my blessing. Now go talk with Pop." I did not get the sister I dreamed of. I got a better one.


Buddy Walk�
Join over 315,000 people at one of over 275 Buddy Walk� events to promote the value, acceptance and inclusion of people with Down syndrome in their own communities. Learn more about the National Buddy Walk� Program and find a local Walk in your area

NDSS has many ways to stay up to date on all the latest Buddy Walk news: on 
Facebook,  Twitter and the  Buddy Walk� Pinterest Board. Thank you to everyone who has shared photos and highlights with us. We look forward to receiving more! 
 
We also encourage everyone to share their Buddy Walk stories and photos with the My Great Story campaign, so we can all read about Walks across the country! 

Buddy Walk� News


 

Our 2015 Times Square Video Contest is Open for Submissions!


On Saturday, September 19, 2015, NDSS will kick off an early start to Down Syndrome Awareness Month (in October) at our New York City Buddy Walk� with our annual Times Square Video, featuring photos of people with Down syndrome from across the world. We invite you to submit a photo for this one-of-a-kind feature presentation! 

 

There are less than two weeks left to submit your photo for a chance to be in the 2015 NDSS Times Square Video contest! We invite you to submit a photo for this one-of-a-kind feature presentation.

 

The contest runs until July 22 and winners will be contacted the first week of August.


                           

2015 Buddy Walk� Webinar Series


The 2015 Buddy Walk� Webinar series is back by popular demand.  These webinar provides you with best practices, innovative ideas and the passion of seasoned Buddy Walk� organizers, NDSS staff and National Partners that will help bring your Walk to the next level. A preliminary list of this year's topics include: How to Increase Funds and Attendance at Your (Established) Buddy Walk�, Self-Advocates and the Buddy Walk�, How to Benchmark Your Buddy Walk� for Increased Success, iCanShine and the Buddy Walk�, Involving University Communities in Your Buddy Walk�, Making the Most of Your Teams and Team Captains, Fundraising and Sponsorships, Teams, Social Media Tips and Tricks, Marketing and PR, Making the Buddy Walk� a Year Round Event, Your Buddy Walk� is Over ...Now What (aka No Rest for the Weary) as well as some interactive calls to share ideas.  

Have another topic you'd like to have covered? Let us know!

                           

2015 Buddy Walk� Registration


Buddy Walk� events must be registered annually with NDSS. If you have already registered your Walk for this year, you do NOT need to register again. If you have not registered your Walk, please do the following:  
  • Log in with your user name and password from last year
  • Once logged in, click on "Register a Buddy Walk�" and complete your Walk registration
  • A custom license agreement will be emailed to you once your registration has been reviewed if this is your first Walk; Walks that were held if this last year will be approved upon review
  • For new Walks, your Buddy Walk� registration will be approved when the License Agreement is returned
If you are interested in organizing a Buddy Walk� for the first time, visit the Steps to Register page to get started.    

 

National Partner Spotlight


Thank you to Signing Time! for their continued support of the Buddy Walk� Program!  This year, Signing Time! is offering each Buddy Walk� a set of Baby Signing Time Flash Cards, volumes 1-4 (a $39.99 value).  For a complete list of our national partners and their contributions to the Buddy Walk� program, please visit our National Buddy Walk� Partners page or Pinterest board.    

 

READ MORE

Advocacy
National Advocacy & Policy Center News

 

NDSS Advocates for the 21st Century Cures Act!


The 21st Century Cures Act (H.R. 6) is a bill to improve health care innovation in the US. It was introduced by Representatives Fred Upton (R-MI), Frank Pallone (D-NJ), Joe Pitts (R-PA) and Diana DeGette (D-CO). NDSS supports this bipartisan legislation because it will significantly improve the process for developing new treatments, diagnostics and tools for effective clinical trials related to people with Down syndrome.

The 21st Century Cures Act will boost the efforts of our scientific, research and medical community to develop a number of potential treatments and interventions for people with Down syndrome, including cognitive delay, Alzheimer's disease, childhood leukemia, congenital heart disease, autism spectrum disorders, sleep apnea and epilepsy, to name a few. This legislation will benefit both people with life-threatening diseases for which a cure is being sought as well as those with conditions, like Down syndrome, for which health outcomes and improvements are being pursued so they may live longer and healthier lives.

NDSS DS-Ambassador Christina Grimes (MD) and her family joined NDSS on Capitol Hill on June 16th to advocate for the 21st Century Cures Act. Through her blog A Life Worth Living, read more about her experience and see the letter she handed to many members of Congress so that they could hear her daughter Madison's story and learn why the 21st Century Cures Act is important to their family.
 

Help advocate for the 21st Century Cures Act through the NDSS Advocacy Alert today!


NDSS at Forefront on ABLE Act US Treasurey Regulations and State ABLE Implementation


On Monday, June 22nd the U.S. Department of Treasury released the IRS' notification of proposed ABLE regulations for the Stephen Beck Jr. Achieving a Better Life Experience (ABLE) Act. As you know, our organization, NDSS, was at the forefront of this landmark law's passage last December. NDSS, in collaboration with Autism Speaks and the National Disability Institute is in the process of reviewing the proposed regulations and providing official comments, which are due in 90 days. NDSS believes there are some very positive aspects of the proposed regulations but also some language that needs to be clarified.

On July 14, 2015 at 3:00 PM EDT, join NDSS, the National Disabilities Institute and Autism Speaks for a free webinar discussing the proposed regulations for the ABLE Act. Register for the webinar here.

The ABLE Act will allow individuals with Down syndrome and their families the ability to create a tax-exempt savings account to cover qualified expenses such as education, transportation and healthcare. An ABLE account will help individuals with Down syndrome live full and productive lives. To date, more than 30 states have passed ABLE bills with more to come. States are now working to develop ABLE programs so that these important accounts can become available soon. Go to www.ndss.org/stateable for more information and to follow the progress of the state bills.

 

READ MORE

NDSS State Legislative Agenda

 

In addition to passing state ABLE bills, NDSS has an aggressive state agenda that spans many different topics.  Some examples of recent legislative victories include:


Down Syndrome Pro-Information Bills 

 

Congratulations to advocates in the states of

Illinois, Maine and Texas for passing Down syndrome Pro-Information bills this legislative session. These bills will increase the likelihood that women and families, receiving a prenatal or postnatal diagnosis of Down syndrome, will be given accurate, up-to-date information about Down syndrome by their health care providers. Wisconsin also currently has a Down syndrome information bill before the state legislature, and NDSS is providing support to help get it passed.

NDSS has an extensive NDSS Toolkit on this issue that we will provide to advocates who are interested in bringing a Down syndrome information bill in their state legislature. Please contact us at [email protected] if you would like to discuss this possibility. 

 

Organ Transplant Discrimination

 

Congratulations to advocates in the state of Maryland who successfully passed this bill to ensure that people with disabilities will receive equal consideration for organ transplants and will not be turned away based solely upon their disability. Massachusetts advocates have brought a similar bill and are working towards its passage. If you are interested in this issue, NDSS will provide a toolkit developed with the Autistic Self-Advocacy Network and will work with you to build a cross-disability coalition to work on this bill. Contact [email protected] for more information.


Law Enforcement Training

 

Congratulations to the Maryland advocates who successfully passed the Ethan Saylor Alliance for Self-Advocates as Educators law, which will enable self-advocates to be part of training sessions for law enforcement officials. NDSS played a large role in promoting this legislation in hopes that it will serve as a model for other states.  NDSS will be developing a law enforcement training toolkit; we will let advocates know when it becomes available.

READ MORE

 


Join the NDSS DS-Ambassador program as an advocate volunteer who builds long-lasting relationships with their US Senators and US Representatives. Over the past two years, NDSS DS-Ambassadors helped us make history by advocating for the passage of the ABLE Act and raising awareness, educating and advocating for policy solutions that benefit the Down syndrome community.  Do you want to make a difference in the lives of people with Down syndrome? Become a NDSS DS-Ambassador today! Review and sign the NDSS Volunteer Ambassador Contract, and you're all set to join the program!

 


Straight Talk with Chris Burke

It's Summer Time Again

 

NDSS Goodwill Ambassador Chris Burke is best known for his role as Corky Thacher on the hit ABC show "Life Goes On." Chris works in the NDSS office, where he is a member of the staff. 

In this monthly column, Chris reflects on how summer brings out the child in us all.


How You Can Make a Difference -- Join the Conversation!

  

Follow NDSS on Facebook, Twitter, YouTubeInstagramPinterest 

Subscribe to our NDSS Advocacy Alerts

Attend the Buddy Walk� on Washington 

Help Us Start a State Government Affairs Committee 

Become an NDSS DS-Ambassador 

Donate to NDSS

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