CURE NATION: Leading disability advocate Donna Cruz Jones made history recently when she testified on Capitol Hill, eloquently asking for Congressional funding for the National Spina Bifida Patient Registry on behalf of the Spina Bifida Association.
We are delighted to share video of her impressive Capitol Hill testimony for you below along with Donna’s life journey. We hope this encourages YOU to raise your voice too as we all strive to provide better care and resources for our friends, neighbors and loved ones.
DONNA CRUZ JONES DEFIED THE DOCTOR’S OPINION ON SPINA BIFIDA simply by living
A zest for life has driven Donna since the day she was born on the island of Guam in 1976 before she ever knew she had such an important purpose.
In the minutes following her birth, the doctor who delivered her had to rush down to the medical library to figure what exactly was wrong with Donna. When he returned he gave her father some frightening news.
Donna’s father learned his new baby girl had Spina Bifida, myelomeningocele to be exact, which was considered to be the worst form of the condition. The doctors told Donna’s dad that she’d never be able to walk or talk, that she’d be a vegetable, and that her family should commit her to an institution and forget about her.
Fortunately, Donna’s dad was a WWII veteran and he refused to back down from any challenge. Instead, he threatened the doctor’s life for suggesting such a thing.
Donna was immediately flown on a medical charter flight to San Francisco for her first shunt surgery, then on to Duke Hospital in North Carolina where her family had discovered the best Spina Bifida doctors in the country during that day and age.
She grew up going back and forth between Guam, North Carolina and Kentucky as her medical needs and her father’s business dictated. Most of her younger years revolved around surgeries to help manage the problems caused by her disorder, like bladder enlargement to help mitigate incontinence.
DONNA IS INVITED TO CAPITOL HILL FOR THE FIRST TIME
In 2004, Donna traveled to visit her sister and brother-in-law in Washington D.C., and it just so happened the chief of staff for Congressman Dan Burton came over one evening.
When he directly asked Donna if she wanted to do something worthwhile during the summer, Donna said “Well yes.”
Soon after she reported to Congressman Burton’s office on Capitol Hill, opening mail, answering phones and greeting people who came to see the congressman, and as with most things Donna dives into, she loved every minute of it.
The Congressman noticed her one day and asked her to plan an official trip for them to Guam, after which he hired Donna to be his special assistant. Sadly, she had to leave her position in November of 2005 when her shunt malfunctioned and needed surgery.
While she was living in Washington, DC, Donna also joined the Spina Bifida Association. She says it was one of the happiest moments of her life when she got to attend the national Spina Bifida conference and meet hundreds of individuals just like her.
Donna never knew so many people with Spina Bifida existed, let alone adults, prior to that time.
From then on, she was a dedicated advocate for the SBA. Soon after, Donna was elected and served three years on the Spina Bifida Association of America’s Board of Directors.
DONNA discovers her life purpose during her SECOND TRIP TO WASHINGTON, DC
When Congressman Burton’s office called again to ask her to fill in for the scheduler who was going on maternity leave, Donna jumped at the chance.
“The second time around was such a wonderful time to be there. It was an exciting time. There was lots of legislation being passed for people with disabilities and we were right in the middle of it,” Donna says.
“I was even given the opportunity to meet with disability advocacy groups who came up on The Hill to discuss legislation being debated in Congress. I don’t think they weren’t expecting to meet someone with a disability and they didn’t think our office was in favor of the legislation,” she continues, “but Congressman Burton told me to go out there and tell them that we do!”
“We discussed my boss’s position and I was proud to say that he would vote in favor of it. That meant the world to me,” Donna relays.
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. “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.
“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.”
VIDEO: WATCH DONNA CRUZ JONES TESTIFY ON CAPITOL HILL FOR SPINA BIFIDA FUNDING
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.”
JOIN TEAL ON THE HILL TO ADVOCATE FOR PEOPLE WHO HAVE SPINA BIFIDA
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!
Teal on the Hill is the Spina Bifida Association’s annual advocacy day on Capitol Hill. Join the Cure Medical team and hundreds of members of the Spina Bifida community from across the United States as we create a sea of teal on Capitol Hill.
While there, the group will be advocating for 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.
When: May 6-8, 2019
Where: Hilton Alexandria Old Town, 1767 King St, Alexandria VA 22314
Cure Medical is a proud financial supporter of this advocacy event. We will be attending the conference and meeting with Congressional representatives during the event alongside Teal on the Hill participants.
Your voice matters!
Please join us for this empowering event and become an advocate for a brighter future for people with Spina Bifida. Learn more here.
VIDEO: WHAT HAPPENS AT TEAL ON THE HILL
DONNA’s next aim is for a weightlifting record
Donna is the first to tell you she’s learned that each day of health is a blessing. She knows to love life to the fullest. “I’m 42, I’m alive and I’m healthy!”
True to form, Donna is taking on another challenge, one that might seem daunting. She’s aiming to set a U.S. woman’s bench press record in the 114-lb. weight class.While visiting a friend in Los Angeles recently, she met a personal trainer named Dustin Martin who took a special interest in her and adapted his workouts to suit her.
Donna has had many trainers in the past but Dustin was the first trainer who really took an interest in adaptive exercise for a person with a disability.
Together, they discovered Donna was making tremendous gains. In the gym one day, when Donna saw some guys working out on the bench press, she said to herself, ‘I want to try that.’
“After years of working together, when Donna started approaching the 180 lb. mark on her bench, she thought ‘I wonder what the record is?’
Currently, the U.S. women’s record bench press in her weight class is 242 lbs., and on June 29, 2019, Donna will attempt to break it.
WHY DONNA CRUZ JONES CHOOSES A CURE CATHETER
With as much attention that Donna gives to her health and well-being, as well as advocating for the same for others in the Spina Bifida community, it’s no surprise that she is also vocal about a daily medical supply from Cure Medical that has helped her tremendously.
“The Cure Catheter® has changed my life! It’s given me peace of mind,” Donna shares.
“A lot of us with Spina Bifida have bladder expansion surgery and the intestine they use to expand the bladder keeps producing mucous, which can make self-cathing more difficult,” she adds.
Donna explains, “My urologist suggested I try the Cure Catheter® because none of the others were working for me and, oh boy, what a game-changer it has been!”
“It empties my bladder quickly and efficiently, and it’s compact. It keeps infections away. I’m so grateful to have it.” To request free samples of the Cure Catheter® that Donna prefers or any Cure Medical catheter, contact your local distributor of quality healthcare products, or click here.
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