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2019 Teal on the Hill Highlights: Advocating for People with Spina Bifida - Cure Medical

cure nation logoCURE NATION: This week, more than 100 people who have Spina Bifida joined forces with loved ones and health care providers from across the nation with one goal in mind: to advocate on Capitol Hill for health care coverage and disability issues impacting people who have Spina Bifida. 

Hosted by the Spina Bifida Association, the annual Teal on the Hill event addresses issues such as continued funding for the Spina Bifida program at the Centers for Disease Control & Prevention, disability rights, and affordable and accessible health care, medical supplies, and technologies.

VIDEO: WHAT HAPPENS AT TEAL ON THE HILL

Below are some pictorial highlights and accomplishments from the 2019 Teal on the Hill advocacy event.

The Cure Medical team and hundreds of members of the Spina Bifida community from across the United States were thrilled to help create sea of teal on Capitol Hill!

Cure Medical was a proud financial sponsor of this year’s event, and even more importantly, our representatives marched alongside participants, attending meetings at the Congressional and Senate level on behalf of the Spina Bifida community.

2019 Teal on the Hill participants met with Congressional representatives to advocate for Spina Bifida issues. Pictured: Chris Collin, With Chris Collin, Jennifer Fitz-Roy, Julie Yindra and Haley Sayer.

2019 Teal on the Hill participants met with Congressional representatives to advocate for Spina Bifida issues. Pictured: Cure Advocate Chris Collin, With Chris Collin, Jennifer Fitz-Roy, Julie Yindra and Haley Sayer.

Several different chapters and advocacy groups sent teams from across the Nation to bring attention to topics of vital interest related to Spina Bifida health concerns and more.

Pictured below, pediatric urologist John Wiener and members of the Duke Children’s Hospital Spina Bifida team, including Maryellen Kelly and Jen Stout, joined hundreds from across the US to create a sea of teal on Capitol Hill. Thank you Representative David E. Price and staff for the welcome and your support in the Spina Bifida Caucus and committees! teal on the hill 2

HOUSE APPROPRIATIONS COMMITTEE APPROVES FUNDING FOR NATIONAL SPINA BIFIDA PROGRAM

While attending meetings on Capitol Hill, participants were overjoyed to hear breaking news that was announced during their event.

If you haven’t already heard the amazing news, the House Appropriations Committee approved the Labor, Education, Health and Human Services portion of the Appropriations bill! This means the $8 million dollars that was requested for the National Spina Bifida Program at the CDC made it into the final House bill.

teal on the hill group

From here, the bill will move into the Senate for a final vote to approve it at that level too.

YOUR VOICE MATTERS: PROOF THAT SPINA BIFIDA ADVOCACY WORKS

While it may seem that you are often the lone voice in the crowd speaking up for your disability, or that of someone you love, always remember that your voice matters!

Spina Bifida Advocate Donna Cruz Jones knows firsthand how important your role is in bringing attention to the healthcare needs of the Spina Bifida community.  Prior to the Teal on the Hill event, Donna was invited to testify in front of the House Appropriations Committee on the need for continued Spina Bifida resource funding.

Donna Cruz Jones and Will Dickey are two vocal Spina Bifida advocates who aim to help other people who have the condition too.

Donna Cruz Jones and Will Dickey are two vocal Spina Bifida advocates who aim to help other people who have the condition too.

CAPITOL HILL INVITES DONNA TO TESTIFY ON BEHALF OF PEOPLE WITH SPINA BIFIDA

This past February, the SBA called on Donna to provide testimony about what it’s like to be an adult with Spina Bifida.  See the full story on that here.

“I didn’t know the Appropriations Committee was going to ask me to go testify in D.C. I thought I was giving written testimony,” Donna says. “But I was willing and ready.”

Donna realized this was the cause she was born to represent. She had to do it.

That’s how she found herself back on Capitol Hill for the third time in her life, with the goal of shining a spotlight on funding for the National Spina Bifida Patient Registry.

teal on the hill group 1“The Patient Registry is vital for developing sound treatments for people with Spina Bifida,” Donna explains.

“There are 21 Spina Bifida clinics in the U.S. that participate in the registry, and each patient has their urologic treatment and outcomes entered into the database,” she continues. “We know that babies are born with healthy kidneys, but by the time they get to five years old, their kidneys are significantly damaged. Lots of UTI’s and antibiotics take a toll on young kidneys and we need to better treat it. This is how we’re going to save lives.”

Watch how her testimony below helped the House Appropriations Committee better understand the need to continue funding the National Spina Bifida program:

Donna knows all too well the dangers of living with Spina Bifida, specifically when it comes to surviving to adulthood. She is part of the first generation to survive to adulthood, and on April 20th, she’ll turn 43.

“Too many of my friends are already gone,” she laments. “Some of them never saw the age of 30. There was a time in my life where I didn’t allow myself to think about my 30s. I couldn’t fathom getting there.”

HOW YOU CAN BECOME A SPINA BIFIDA ADVOCATE TOO

If you have an interest in helping advance healthcare coverage and other opportunities for people who have Spina Bifida, we have an exciting way for you to get involved!

Please consider joining Donna along with the CURE NATION in more Spina Bifida Association advocacy events as we strive to provide a brighter future for people with Spina Bifida.  Learn more here.

One meeting down, we were in Senator Kamala Harris’ office, what a great meeting with her health legislative staffer. She listened so intently, asked questions and gave us so much of her time. Thank you Senator Harris for starting our day out amazing! — with Wallace Beard, Patti Jasinki, Eric Tobin and Anna Hairston.

Tom’s Team meets with Senator Kamala Harris’ office to cover healthcare legislation topics. Pictured include: Donna Cruz Jones, Cure representative Chris Sellwood, Wallace Beard, Patti Jasinki, Eric Tobin and Anna Hairston.

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