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National Down Syndrome Society E-Newsletter
December 2011
   
  
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Shop NDSS for Everyone on Your List:
Signature Shirts are Here!
Last month we introduced Shop NDSS partner Rhyme & Reason Clothing and announced that NDSS signature t-shirts would be coming soon. The wait is over! We are proud to unveil a collection of men's, women's and kids' t-shirts featuring 3:21 on the front, symbolic of the third copy of chromosome 21 in Trisomy 21, and the NDSS logo on the back.
Adult shirts are $25 each and kids' shirts are $15 each. $5 will be donated to NDSS for every signature shirt purchased.
 Guys will love the fit and feel of this t-shirt, made from 100% cotton with anti-pilling finish. It is so comfortable it will become an instant favorite, and its subtle message will make them feel good about wearing it as often as their favorite jeans (okay, maybe not that often).  The quality and fit of the women's t-shirt will make it the one that spends more time outside the drawer than in it, and wearing it will help to spread the word that people with Down syndrome are valued and loved members of our society. The flattering style and color options suit all sizes and skin tones. The women's shirts are made from 95% cotton, 5% lycra with an anti-pilling finish.
Whether they're learning to tell time or setting their own alarm clocks, kids will love knowing the 'secret' meaning behind 3:21 and will enjoy sharing this info with their friends. It's always the right time to learn to accept and include someone with Down syndrome! These t-shirts are made from 100% cotton with anti-pilling finish. Rhyme & Reason clothing can only be purchased online. Standard shipping time is 3-5 business days. For all items other than NDSS signature t-shirts, customers who use the code NDSS25 will receive 25% off their purchase and free shipping from now until the end of the year. 10% of these purchases will be donated to NDSS. Click here to visit the Rhyme & Reason website. Click here to view more photos of the NDSS Signature t-shirts on Facebook.   |
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NDSS National Policy Center Update
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Trisomy 21 Research Bills Introduced in the Senate
On November 10, Senators Sherrod Brown (D-OH) and Susan Collins (R-ME) introduced two bipartisan Down syndrome research bills. These bills, the Trisomy 21 Research Centers of Excellence Act of 2011 (S. 1840) and Trisomy 21 Research Resource Act of 2011 (S. 1841) make up the 21 Act package. They are the same bills (H.R. 2695 and H.R. 2696) that were introduced in the House of Representatives by Representatives Cathy McMorris Rodgers (R-WA), Chris Van Hollen (D-MD), and Pete Sessions (R-TX) in July of this year. Click here to see the statement issued by Senators Brown & Collins on the introduction of the Down syndrome research bills.
Special thank you to our Ohio and Maine affiliates and advocates for their hard work on seeing that these bills were introduced.
ABLE Act Introduced in the House and Senate
The Achieving a Better Life Experience Act (ABLE) of 2011 (S. 1872/H.R. 3423) was introduced in the 112th Congress (2011-2012 Congressional cycle) on November 15. The ABLE Act will give individuals with disabilities and their families the ability to save for their child's future, just like every other American family, and help people with disabilities live full, productive lives in their communities without losing benefits provided through private insurances, the Medicaid program, the Supplemental Security Income program, the beneficiary's employment and other sources. The account could fund a variety of essential expenses for individuals, including medical and dental care, education, community based supports, employment training, assistive technology, housing and transportation.
We currently have six cosponsors in the Senate and 40 in the House. If your members haven't signed on, please take a few moments and click here to email your Representative and two Senators.
For more information on the ABLE Act, please see the following:
- ABLE Act of 2011 Background
- ABLE Act Press Conference Photos
- Actress Lauren Potter Speaks Out About the ABLE Act
- Representative Ander Crenshaw's (R-FL) Floor Speech on the Introduction of the ABLE Act
2011 State of the Art Conference on Postsecondary Education
NDSS and George Mason University (GMU) sponsored the 2011 State of the Art Conference on Postsecondary Education and Individuals with Intellectual Disabilities that took place in Fairfax, VA on November 3 and 4. NDSS Board Member Rob Taishoff and his wife Laurie were keynote speakers, and laid out a vision for the future of inclusive postsecondary education. Other keynote speakers included NDSS VP of Public Policy Madeleine Will, senior officials of the U.S. Department of Education and Administration on Developmental Disabilities, and an outstanding panel of students and self-advocates. The Conference of 300 attendees included college and university faculty, researchers, administration officials, parents and self-advocates. The sessions provided practical ideas and solutions for developing and expanding high-quality, inclusive postsecondary opportunities. Conference evaluations were extremely positive and participants and anticipation is already building for the next conference that will take place November 29 and 30, 2012 at GMU.
Click here to review the Conference agenda.
Click here to view a selection of photos from the Conference.
Click here for an excellent description of the Conference written by GMU senior, and conference panelist, Lauren Soljanyk Lee.
Funding for Postsecondary Education
Funding for the postsecondary education projects for students with intellectual disabilities, authorized by the Higher Education Act, is in jeopardy for next fiscal year. While the Senate Appropriations Committee passed a bill that would continue funding at $10.9 million for fiscal year 2012, the House draft bill does not include any funding for the Transition and Postsecondary Programs for Students with Intellectual Disabilities (TPSIDS). NDSS has written letters that are being signed onto by national organizations and sent to Congress to encourage the continued funding of this critically important program.
Click here to read the letter to the Senate Committee.
Click here to read the letter to the House Committee.
In order for students with intellectual disabilities to receive federal financial aid, the college or university must apply to have an approved program. The U.S. Department of Education recently imposed new requirements that would require additional bureaucratic hoops. NDSS led a successful effort to reduce these requirements. However, a major problem remains - these new programs are now required to follow the requirements for "Gainful Employment Programs." NDSS wrote public comments on proposed regulations related to issues about gainful employment and students with intellectual disabilities that have been signed onto by 26 national organizations.
Click here for more information on this issue.
Click here to read the joint public comment letter.
Meeting with Senior U.S. Department of Education Officials
Along with other members of the Collaboration to Promote Self Determination (CPSD), NDSS National Policy Center staff met with representatives of the U.S. Department of Education, including Office of Special Education and Rehabilitative Services (OSERS) Deputy Assistant Secretary Sue Swenson, Rehabilitation Services Administration Commissioner Lynnae Ruttledge and Office of Special Education Programs (OSEP) Director Melody Musgrove. The productive meeting focused on issues ranging from preschool through postsecondary education and employment, which impact students with intellectual disabilities .
Elementary and Secondary Education Act (ESEA)
NDSS continues to work on the reauthorization of the Elementary and Secondary Education Act (ESEA). Independently, and in collaboration with a number of coalitions, NDSS has been contacting Senate staff to gain support for amendments that would improve the bill that was passed by the Senate Health, Education, Labor and Pensions Committee on October 20.
The full Senate is not expected to vote on an ESEA bill until 2012. The amendments we hope the Senate will pass focus on the following issues:
- All schools (not just those in the bottom 5%) must be accountable for the academic achievement of students with disabilities.
- All teachers must be highly qualified and have the skills needed to use the principles of Universal Design for Learning (UDL).
- All students who take alternate assessments must be provided access to the general curriculum and should not be precluded from the opportunity to earn a diploma.
- All states that base accountability on student growth must focus on the amount of student growth it would take for these students to be college and career ready by the time they graduate. Students who are not on track to meet that goal must be on track within three years.
Status of ESEA "Flexibility Requests":
- Colorado, Florida, Georgia, Indiana, Kentucky, Massachusetts, Minnesota, New Jersey, New Mexico, Oklahoma and Tennessee have submitted Flexibility Requests to the U.S. Department of Education. An additional 28 states have submitted documents expressing their intent to submit Flexibility Requests in mid-February.
- If approved, the Flexibility Requests will allow these states to waive key provisions of ESEA. In exchange, they are expected to provide evidence that they have "rigorous and comprehensive state-developed plans designed to improve educational outcomes for all students, close achievement gaps, increase equity, and improve the quality of instruction."
- A panel of peer reviewers will help determine which Flexibility Requests are approved. We are pleased that two of the three experts NDSS nominated were chosen to serve as peer reviewers for the first group of submissions.
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Buddy WalkŪ on Washington
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Join NDSS in Washington D.C. on February 29 - March 1 to
Advocate for People with Down Syndrome!
Make your voice heard at the annual Buddy WalkŪ on Washington. This two-day advocacy experience brings the Down syndrome community together to advocate for public policies that impact the lives of people with Down syndrome and their families. Participants come face-to-face with members of Congress and their staff to encourage them to advance education, research and healthcare for people with Down syndrome. Attendees join forces with other Down syndrome advocates from around the country to participate in an interactive advocacy training, a celebration and advocacy awards dinner, and spend a day on Capitol Hill in an effort to improve public policy. The experience is perfectly suited for self-advocates, family members, professionals, affiliate leaders and members, and anyone else who wants to make a difference for people with Down syndrome.
This year, NDSS has partnered with Down Syndrome Affiliates in Action (DSAIA) to bring all DSAIA Leadership Conference attendees to the NDSS Buddy Walk on Washington. DSAIA and NDSS are holding the annual events concurrently in 2012, with the DSAIA Conference on March 2 - 3, allowing anyone who wishes to attend both events to save on travel cost and time. The partnership was established to maximize the power and presence of the Down syndrome community on Capitol Hill.
Click here to register and learn more.
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Sign up to Receive Important Policy Action Alerts
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Be an Advocate!
You can help make a difference in the lives of people with Down syndrome through advocacy! Whether you aren't sure who your local elected representatives are or you are a seasoned advocate, there are many ways for everyone to get involved.
Click here to learn more and to sign up to receive important action alerts from the NDSS National Policy Center.
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Free Webinars for the Down Syndrome Community
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Each month, NDSS provides an educational webinar free of charge to anyone who is interested in learning more about Down syndrome and health, education, research, family life and more. In past months, families, self-advocates, affiliates and others have enjoyed presentations on oral health, with Dr. Jessica DeBord, vision with Dr. William Motley and an innovative, inclusive camp program with Jenni Newbury.
Click here for more information on past NDSS webinars.
In December, the NDSS webinar will be "ABLE Act 101 - Everything You Need to Know About the ABLE Act." The presentation will be on December 7 at 1pm ET and include guest speakers John Ariale, Chief of Staff for Representative Ander Crenshaw (R-FL); Jennifer Debes, Legislative Assistant for Representative Ander Crenshaw (R-FL); Steve Beck, NDSS Affiliate Advisory Board Member; Madeleine Will, NDSS VP of Public Policy; and Sara Weir, NDSS Senior Policy Advisor.
Click here to learn more and to register.
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Buddy WalkŪ News
| As the 2011 Buddy WalkŪ season comes to a close, we would like to thank all of our affiliates, sponsoring organizations and families for their role in making this one of the most successful years in Buddy Walk history, despite the tough economic times. We are still gathering information from the Walks across the country and will provide a comprehensive recap of the year once the information is compiled.
Attention 2011 Buddy Walk organizers: We are excited to announce that our national partner Down Syndrome Footprint will provide the first 10 respondents to the 2011 Buddy Walk Organizer's Survey a $20 gift card for Down Syndrome Footprint merchandise. Please click here to fill out the survey (limit one response per organization/Walk).
To learn more about the National Buddy Walk Program, visit www.buddywalk.org.
NDSS Recognizes Knology for Their Continued Support of the Buddy Walk Program
Knology has been a national partner of NDSS for the past three years, but their involvement with local Walks goes back as far as eight years, when they first participated in the Buddy Walk in Montgomery, AL. Over the years, the Knology staff has grown to love the Buddy Walk program and respect the families they serve through their participation. This past year, the 11 Walks they supported raised over $500,000 with over 16,000 collectively walking in all locations. The impact that Knology has on these organizations lasts long beyond the Buddy Walk - they have increased confidence and enthusiasm across the board. We are pleased to share some words from Walk organizers across the country.
- "When Knology became involved with our Buddy Walk four years ago we never knew what to expect, but they have been amazing! The employees are great to work with, and they and their families have gotten involved as well, which is so exciting to see. It is like a family reunion every year. They support us in so many different ways, from planning to the advertising they do. Because of their involvement with the Buddy Walk, they have become active members of the group, attending our activities and assisting us throughout the year. They even have two wonderful individuals on our Board of Directors. We can not say thank you enough for all they do, but we truly appreciate everything they do for us for the Buddy Walk and the group throughout the year! They are the greatest and we are so blessed to have them part of us!"
- Mona Drolc, Ups of Downs, Rapid City, SD
- "The Knology team was critical to the success of this year's Atlanta Buddy Walk. We benefited from having a great fundraising team, additional donations to our silent auction and an excellent group of volunteers for the day of the event. We could not have run the registration area without their support. They took over the tent and helped register participants, pass out shirts and collect money. We appreciated the enthusiasm and energy they provided during the entire event.
- Scott Hilton, Down Syndrome Association of Atlanta, GA
- "To say that Knology is an advocate for Down syndrome in the Alabama Wiregrass is a HUGE understatement. Knology is a true friend to EVERY person with Down syndrome in the Wiregrass. They don't just give money and expertise, they give their hearts. Our Walk would never have happened were it not for Knology. (The Knology staff started the Buddy Walk in this community.) Now after four years, we're 2,500 - 3,000 strong at the Buddy Walk and our board has trouble stewarding all the money! What a great problem, huh?! Thanks to NDSS for everything you provide all Buddy Walks!"
- Anne Cline, Wiregrass Area Buddy Walk, Dothan, AL
- "The Down Syndrome Awareness Group of East Tennessee was privileged to work with the Knoxville Knology office for the Buddy Walk this year. The staff was a huge help during preparation in publicly promoting the Buddy Walk. The Knology staff was, as usual, present to help with the actual event on Buddy Walk day. What a blessing to work with such a hands-on company that supports our Walk!"
- Kelley Brickey, Down Syndrome Awareness Group of East Tennessee, Knoxville, TN
- "I have to say that in Panama City, FL our main Knology contact was my right hand man. He helped in so many ways and was always making sure that I didn't have too much on my plate. Besides the great media coverage, he offered us the use of the Knology office to hold our Buddy Walk meetings (and always had coffee), took care of the printing for us, and is continuing to add future fundraising activities for our group. There were several employees at the Walk and all were very helpful. Next year, they have offered to get some walkie-talkies for our staff to make communicating with each other on-site much easier. Not only do members of the Knology staff attend our meetings, one has been a board member for a while and is our new Acton Up With Downs President. Thank you Knology!"
- Carla Macks, Acton Up With Downs, Panama City, FL
Buddy Walk Successes From Around the Country
- The 7th Annual Sonoma County Down Syndrome Support Group Buddy Walk took place on Sunday, September 25. Over 500 individuals came out to enjoy the festivities and celebrate individuals with Down syndrome. Over $16,000 was raised to support their programs and services as well as the national policy efforts of the National Down Syndrome Society. Click here to read more about their story on the Buddy Walk blog.
- The Down Syndrome Association of Delaware had a record breaking year with more than 2,100 participants raising more than $105,000. They had over 75 teams showing support for individuals with Down syndrome.
- The Down Syndrome Partnership of Tarrant County (OH) held their biggest and best Buddy Walk ever! An estimated 4,500 people turned out to support the acceptance and inclusion of individuals with Down syndrome, helping raise an unprecedented $190,000 to support their programs and services, the Green Oaks School and NDSS. Way to go!
- The 2nd Annual Rio Grande Down Syndrome Network Buddy Walk in Albuquerque, NM was a huge success. They doubled their participation amount, with total walkers estimated at 1,000 and more than doubled their net proceeds from last year. After expenses, they raised over $25,000!
2012 Buddy Walk Registration is Now Open
We are excited to announce that registration for the 2012 Buddy Walk season is now open. Please remember that a new registration must be completed each year in order for your group to remain a part of the national program. Once your Buddy Walk registration is received in the NDSS office, a customized License Agreement will be emailed to you. When the signed Agreement is returned to the office (by email, fax or mail), your Walk registration will be processed.
Click here to log in with last year's user name and password to speed up the process.
Are you a new organizer? Click here to get started.
2012 Buddy Walk Conference
The 2012 National Buddy Walk Conference will be co-sponsored by the Massachusetts Down Syndrome Congress. Stay tuned next month for a save the date and more information on our 4th annual Conference. We'd love to hear your thoughts on what you'd like to see included. Click here to share your ideas.
Stay Connected
NDSS has many ways to stay up to date on all the latest Buddy Walk news: on Facebook, Twitter and the Buddy Walk blog. Thank you to everyone who has shared your photos and highlights and with us. We look forward to receiving more! If you would like to suggest a topic for the Buddy Walk blog or would like to be a guest blogger, please click here.
Do you have a Buddy Walk story you'd like to share? Click here to view the My Great Story Buddy Walk section and add your story!
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Fundraiser Focus
NDSS is energized by motivated people who contact us about wanting to make a difference in their community and on a national level. Each month, this section features an individual, family or group who has donated time and energy to creating exciting ways to support the value, acceptance and inclusion of people with Down syndrome by raising awareness and money for NDSS.
Featherstone Design
 NDSS congratulates our longtime friends at Featherstone Design for being named the winner of "Best Use of Color" at the 2012 American Gem Trade Association (AGTA) Spectrum Awards.
Raising funds for NDSS has been Deirdre Featherstone's hobby for more than 10 years, and she continues to honor her daughter Catherine by selling NDSS Bow Pins and donating all of the profits. Deirdre has been known to put everything else on hold to take a call from someone inquiring about the NDSS Bow Pin. Your stories are very much a part of her creative inspiration. A NDSS Bow Pin from Featherstone Design costs $75. As they did in 2010, Featherstone Design will donate 100% of all Bow Pin purchases to NDSS. If you're interested in something other than the classic sterling silver pin, Deirdre and the studio team are happy to work with you to create a more personal NDSS Bow. You can customize your NDSS Bow by adding birthstone detail or upgrading to gold or platinum. You can also create an entirely new piece of jewelry - a necklace, earrings, a ring, a charm, etc. Call the Featherstone Design Studio at 212-343-0604 to explore your options for creating a custom jewelry story with them. Click here to visit the Featherstone Design website. Click here to contact Pam Sandonato, VP of Development, about retail partnerships.
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Do You Blog?
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NDSS is looking to build a database of bloggers who are sharing their stories, wisdom and journeys about Down syndrome. So many of you are providing a wealth of information about raising a child, loving a sibling or having a friend with Down syndrome. We want to make sure we know who you are and how we can work together on outreach efforts.
If you'd like to stay closely connected to NDSS in cyberspace, please click here to send an email with your name, blog title and URL to Jordana Stern, NDSS Communications Associate.
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Vehicles for Charity
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 Recently, NDSS spent time getting to know the group behind Vehicles for Charity and we are proud to partner with them.
Back in 1995, the Metropolitan ARC (MARC), a Colorado nonprofit organization, started using vehicle donations as a fundraising source to support their advocacy work for individuals with disabilities. Demand grew from nonprofit groups around them and in 2001, Vehicles for Charity (VFC) was established. This comprehensive vehicle donation program was developed and implemented to provide for prompt and professional disposition of vehicles donated to VFC, which handles all details of the vehicle donation process.
NDSS will receive 80% of the profits from a donated vehicle. Profit is the net after towing and auction fees are deducted from the sale price, which is usually around $150.
The other 20% will go to MARC, which means that 100% of the profits from this vehicle donation program stay in the disabilities community.
Here is how it works:
- The initial inquiry, in the form of a phone call or completion of an online form, takes less than ten minutes. NDSS should be the charity named on the form.
- The donor is instructed to remove the license plates from the vehicle and sign the title prior to pick-up, which is arranged by a local auto auction.
- Vehicle pick-up is scheduled with the tow company within 2-4 business days.
- Depending on the condition of the vehicle, it is either taken to an auction for sale or to an auto crusher for recycling purposes.
- A donation acknowledgement is mailed to the donor within 30 days following the sale of their vehicle.
- NDSS receives a contribution from sales once a month.
Click here to visit the Vehicles for Charity website. | | |
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Free Donations to NDSS this Holiday Season
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NDSS has teamed up with GoodShop.com this holiday season to bring you 100,000 coupons and free shipping deals at over 2,500 stores, including Apple, Amazon, Best Buy, Dell, Gap, Target and so many more. In addition to great deals for you, up to 30% of every purchase you make at each retailer through GoodShop will be donated to NDSS at no extra cost - it's a win-win!
Click here to visit GoodShop and start donating to NDSS every time you shop!
In addition, for every search conducted on GoodShop's sister site GoodSearch.com, approximately one penny is donated to NDSS. A penny might not sound like much, but if you use GoodSearch for every search, they add up quickly. Just use it like any other search engine to begin making free donations to NDSS!
Click here to visit GoodSearch and give back to NDSS with each search.
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Come Together for a Cause
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NDSS is seeking leaders from across the country to join us in an effort to plan multiple events in multiple cities on Wednesday, March 21, official World Down Syndrome Day! After our last e-newsletter went out, we heard about this cool idea in WV:
Mike and Susie Ramussen of Gilbert, WV founded a non-profit charity called the Mud Buddies Foundation that provides no-fee guided ATV rides to individuals with disabilities. For World Down Syndrome Day they are going to plan a ride in partnership with ATV clubs to raise awareness for people with Down syndrome and NDSS.
Consider starting an event in your area that can expand our presence in your community and raise money and awareness in honor of World Down Syndrome Day. Click here to contact NDSS VP of Development Pam Sandonato to share your thoughts and learn how you can help make a difference your own way.
Stay tuned for details about a Twitter party using #321 on the night of these events.
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Scholar Spotlight
Each year NDSS awards postsecondary scholarships to students with Down syndrome through the O'Neill Tabani Enrichment Fund. In 2011, twelve outstanding students received grants to help cover the cost of their postsecondary or enrichment courses. Recipients of the 2011 O'Neill Tabani Enrichment Fund were invited to write about their experiences as students.
 Erin McNulty of Landsdowne, PA is one of this year's recipients of the O'Neill Tabani Enrichment Fund. She earned her high school diploma from St. Katherine's Day School in Radio, PA in 2010 and enrolled at Temple University in Philadelphia, PA this semester. Education and extracurricular school activities have always been an important part of Erin's life. As she told NDSS:
"I liked high school a lot. I especially liked acting and dancing in the 12 school musicals I was in. I liked being in Best Buddies. I was the Buddy Director for my school. I spoke about Best Buddies at two local high schools and traveled to Indiana for the national convention. When I graduated, I was Valedictorian.
Most of my friends from high school are in college. I am excited to continue my education. I hope that college will help me to learn to be independent so I can live with my friends in the future. I want to take classes to help me get a good job. I want to take a computer class. But my dream is to work at a job that I like and that I am good at. College will help me get the confidence and skills that I will need to get a job like that."
Click here to learn more about the O'Neill Tabani Enrichment Fund.
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Share Your Holiday Stories with My Great Story!
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The Holiday Season is a great time shared with family, friends and those who mean the most to you. NDSS invites you to share your holiday stories with the My Great Story public awareness campaign, and ignite a new way of thinking about people with Down syndrome while spreading holiday cheer. If you have a holiday card that you'd like to show off with your story, we'd love to see it!
Click here to visit the My Great Story public awareness campaign and to share your story.
The top story in the Holiday Season section will be featured in next month's e-news (and the top story overall wins a prize!) so share your story and spread the word this month.
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My Great Story of the Month Contest
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Congratulations to Corinne Bludworth, Whitefish, MT, on winning the My Great Story of the Month Contest! Corinne's story received the most votes in November, so she will be receiving a $50 gift certificate to ShoeBuy.com!
In December, the author of the story with the most votes will win a beautiful gift box of BISCOTTEA & BIS*COFFEE Gourmet Shortbread. Share your story and spread the word throughout the month to win this prize!
Click here to share your story.
BISCOTTEA & BIS*COFFE is gourmet shortbread baked with real world style organic tea and Fair Trade coffee. The new Holiday Gift Box is the perfect gift to give this holiday season! They're available for purchase in the U.S., Canada, Europe as well as Japan. Click here for more information or to make a purchase.
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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.
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The story with the most votes this month was featured in our February 2011 E-Newsletter.
Click here to read Just Jordan, by Corinne Bludworth, Whitefish, Montana.
The Smile that Changed My Life...
Heather Quist
Comstock Park, Michigan
 From the huge hugs, to the eye watering laughs, to the three phone calls I receive each day, I realize that my life is truly special. I was one of the lucky ones chosen to have a younger sister who was born with Down syndrome. When I was younger, I didn't understand that she was any different, to me she was just a younger sibling that I could share my toys with and maybe boss around a little. When I fully began to realize that Rosie was born with a condition that would affect her whole life, it saddened me. I couldn't wrap my head around the idea that she had to live with this syndrome forever; I thought it wasn't fair.
Currently Rosie is 19 and I am going on 22. As I write this, I can't help but smile and think about how truly blessed I am. Rosie has changed my life forever. She inspires me each day and reminds that life is a gift and we need to treasure it. Seeing the excitement on her face when I tell her I am coming home for dinner, after the three voicemails she left me reminding me that she misses me and they are making my favorite meal, I am reminded by how much love she has to give. Whether I'm in a great mood or not, I can look to Rosie to make me laugh. There isn't a day that goes by where she doesn't have my sisters and I laughing so hard that we are crying. I'm not sure if it's her quick remarks or silly dance moves that get me, but I know I can count on her to put a smile on my face.
As we are rounding the corner of her graduating high school and turning 20, I am amazed by how much she has grown into a young lady. I can't wait to see what God has in store for her as she has so much to give. Rosie is truly the glue of our family. She holds us together through the hard times and is an inspiration to everyone she meets. From the second you meet her, I guarantee that you will fall in love with her just as my family and I do everyday.
Thanksgiving Bouquet
Katherine Rivera
Knoxville, Tennessee
 Iris is my daughter, and the Tennessee state flower. She bloomed May 16, five weeks early, and opened her eyes; two brown buds I never tire to gaze into. She had neonatal chylothorax caused by Down syndrome and on top of that, a train of other illnesses. After being wheeled away she was illuminated in a green neon light reflected from the medicines and tangled in plastic including vacuums in her sides to release the chyle (lymphatic) build-up in her lungs. It is a very rare and challenging lung disease to handle, but the nurses and doctors gripped it as horns on a bull. The doctor said, "it could be two weeks or three months, we just don't know." She was breathing with a high frequency oscillator barely holding on with major pulmonary hypertension. Iris was remarkably delivered naturally. I felt strong and fine, I guess I felt like I had to be, for her. While I was in the hospital still after delivering on the second morning around Iris's 39 hours of life, they called me into the NICU. For some reason they wanted me to go in a wheelchair. I chose to walk. Upon arrival I sensed something was wrong. Indeed, Iris's heart had stopped and they had just resuscitated her. I was advised to stay close to the hospital and be with her, for she could die any time that day. She made it through it. I'd say luckily but I heard luck doesn't exist; only blessings. When I drove to and from the hospital in May, while driving I noticed the wild Iris blossoms in my neighbor's yards were wilted and dead. One remained living in the hospital, ever so close to death. Iris was in the hospital for only two months. I say 'only' because that's better than three months. I currently find myself reading all I can, taking in all the information I can from people, filtering through and experimenting advice, and above all listening to my own heart about her needs. I have learned a few things about myself after all this. I have 'a thing' for babies and baby showers. I love and am compassionate towards doctors, nurses, or anyone who works in a hospital and now gladly pay hospital parking. I am now an advocate for children with special needs. Lastly, I am my child's first physical therapist and doctor; it's called, 'mom.' Other children pass away, as do the wild Iris flowers in the spring. Only with the very fact that she is living is a giant lesson from her, so petite and frail. It is a lesson of strength and gratefulness suffice for me to be able to properly love, nurture, and take care of her. Overall, the most important issue is not about Down syndrome, it is about family. Iris is alive and well. This is true Thanksgiving for my family thanks to modern medicine, support surrounding, and the especially the omnipotent Father above. |
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My Great Story
in the Media
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The My Great Story campaign has had some new placements across various media this month!
In Albuquerque, NM, My Great Story author Rebecca Johns was interviewed on the AM730 Morning Show about her submission to the campaign. 
Click here to read Rebecca's story.
In Knoxville, TN, the local ABC affiliate aired segment and tweeted about Donna Crigger and her daughter Samantha, and their My Great Story campaign submission.
Click here to read Donna's story about Samantha.
 Click here to view the segment. Click here to read the tweet. RISE eMagazine featured the My Great Story campaign in recognition of its nomination for the Advocacy Impact Award, Internet Impact Award and Media Impact Award. Congratulations to My Great Story authors Sujeet Desai and Gina Rowland, and 2011 NDSS Spring Luncheon Honoree Jagatjoti Khalsa, who are also featured in this issue. Click here to view the article (on page 23). NDSS would like to extend a special shout out to everyone who blogged, posted and tweeted about the My Great Story campaign this month. Here are a few of those who did: @JennConnally @ 615nevergiveup @ GTDesignStudios @ ds21info @DownSynAdvocacy @Down_Wit_Dat Michael D. Wilder Guy Connor Tena Cunningham If you've shared the My Great Story campaign through a social media outlet, please click here to let us know! Thanks for all of your support and continuing to spread the word! | |
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Social Media
| To keep up with the latest NDSS news and create some buzz:
Click here to become a fan of the NDSS Facebook page.
Click here to become a fan of the Buddy WalkŪ Facebook page.
Click here to follow NDSS on Twitter.
Click here to follow the Buddy Walk on Twitter. | |
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