One of the newest chapters of the Spina Bifida Association has come a long way in just 10 months, as the SBA’s Intermountain Region out west is off to a great start! With Advisory Council members coming together with medical companies like catheter manufacturer Cure Medical to serve local Spina Bifida families, they’ve already made a big impact in the surrounding community.
The Spina Bifida Association of the Intermountain Region (SBA of IR) is dedicated to promoting the prevention of Spina Bifida and to enhancing the lives of all affected. The organization serves individuals with Spina Bifida and their families in throughout Nevada, Utah, Idaho, and the surrounding states.
Over 166,000 Americans live with this birth defect, and through quality of life programs, the SBA of IR has a dedicated group of professionals, families and individuals with Spina Bifida working to provide resources, educate, network, advocate and to bring about public awareness of Spina Bifida and folic acid’s role in reducing the risk.
The SBA of IR’s annual fundraising event, Walk-N-Roll® for Spina Bifida, is a family-friendly walk event held in Las Vegas each fall that raises awareness about Spina Bifida, raises funds to support local community programs and services for those living with Spina Bifida and celebrates the accomplishments of Americans living with it. All proceeds support the mission of the Spina Bifida Association – to promote the prevention of Spina Bifida and enhance the lives of all those affected.
The 2015 edition of the Walk-N-Roll was a huge success due to efforts of the participating families from across the region as well as from financial support thanks to great partners like Cure Medical, who was on hand to cheer on the participants on the day of the event.
Two of the SBA of IR Advisory Council members deserve special recognition for making such a big impact in such a short time. Carlo Vanetti and Evan Frebowitz. Two adults with Spina Bifida both with very different Spina Bifida stories who support and push each other to make a big impact on their local community.
Evan is 30 years old and has lived with his disability since birth. Due to the high location of his lesion, Evan has endured more than 25 major surgeries through the years, including having a tracheostomy and requiring a ventilator, which is now removed. Even though he is very medically involved, Evan meets each challenge with a positive attitude. He managed to get through school, and now enjoys teaching Sunday school classes.
Evan has made a big impact in his Las Vegas community by hosting a booth at the Disability awareness day and by raising over $10,000 for Walk-N-Roll Las Vegas. His willingness to help out and positive attitude really impresses his fellow Advisory Council Members.
“For the first time, thanks to the SBA, I have met some great friends who also share my disability. We have been a great support to one another but what we really want to see happen is getting medical services started here for individuals with spina bifida, being able to get financial assistance with the medical equipment that we need, spreading awareness of what exactly is our disability and how it affects our lives and getting information out,” Evan says.
His friend and fellow advisory council member, Carlo Vanetti has a very different Spina Bifida experience. Born with Spina Bifida Occulta, Carlo wasn’t diagnosed with Spina Bifida until he was fifteen years old.
Carlo has endured multiple major surgeries to untether his spinal cord. After additional medical issues, specialists today tell him his case is too complex to treat locally. Carlo has committed himself and his daily life to increasing awareness and support for those living with Spina Bifida. He considers his role on the Advisory Council to be his full time job, and he takes it seriously.
Thanks to his tenacity and dedication, Carlo has secured $3,500 in Walk-N-Roll Sponsorship funds, an invaluable marketing sponsorship, a large in-kind multiyear sponsorship, and two new chapter corporate sponsorships to be announced in the coming months. Carlo also leads the planning for three chapter social events and secured booths at the area’s largest community festivals.
Carlo’s goal in life is “to help push for major changes within our medical system. I want children and adults with Spina Bifida to get timely medical care and treatment and have easier access to assistive devices and other supportive services when they need it most. I also want to see more research done to help find a cure and to come up with preventive measures that will help keep this spinal condition from occurring in future generations.”
Made Just for Kids: The Cure Pediatric Catheter
Founded by quadriplegic Bob Yant, Cure Medical cares about the quality of their products and the quality of life for people who use them. This is why Cure went above and beyond in addition to supporting ongoing Spina Bifida Association events, and took extra steps to ensure their consumers were getting the most-reviewed and approved pediatric catheter on the market – especially made for kids with Spina Bifida who must self-cath.
The Cure Pediatric Catheter is the first of its kind and the only FDA-approved pediatric catheter available to consumers. These single-use catheters are made without DEHP, BPA and Natural Rubber Latex.
DEHP is a type of toxin that was often used in the past to soften plastics. This chemical was removed and banned from being used children’s toys due to its ability to be absorbed through the mouth and skin. DEHP can cause serious health concerns for some individuals, and has even been listed as a chemical that can cause cancer.
Several kinds of medical devices, including some catheters, still contain DEHP — and this is legal. Where your kids are concerned though, if you can avoid these chemicals all together, there’s no reason not to.
As it is made without DEHP, the Pediatric Catheter is also a comfortable and safe option that can be easily inserted and removed. Its straight tip and fire-polished eyelets allow for insertion and removal without discomfort. Urine flow during catheterization can be easily directed into the toilet with the pediatric catheter funnel ends. The Cure Pediatric catheter sizes range from 8 French to 12 French.
“When there’s options available to create intermittent catheters for kids that work just as well as those made with standard chemicals, there’s really just no reason to use these chemicals anymore if you can avoid it. Cure Medical believes it’s the right thing to do, so we made the decision to go without DEHP on our pediatric catheter line,” Cure Medical CEO John Anderson adds.
If you would like to try the Cure Pediatric Catheter, you can request a free product sample by going to http://www.curemedical.com/request-sample/.
What Cure Users Say
- “Much more comfortable than those I used in the hospital”
- “Your catheter is the very best, I love your product”
- “So soft and smooth I didn’t even feel the catheters insertion! Totally amazing, please keep up the great work.”
- “I have not had any bleeding since I switched to Cure”
- “I had been hospitalized twice for infections even though I sterilized my catheters. Since I went to single use I have had NO episodes of infection. Cure catheters have actually saved my life.”
- “God Bless you for caring”
- “With the Cure catheter it is easier and draining is more complete. Thank you for everything you do”
- “I haven’t had a bladder infection since I started using them. Just Great!”
- “The Cure catheter is a very good product. I will not use any other kind!”
- “I have never loved to cath. But it is almost a pleasure to use yours. I love them! I cath like I am supposed to now because it doesn’t hurt anymore. Thank You!!
- “I like this product and the causes that this company supports. The more money to support spinal cord research, the more blessings that will come in the future for patients living with SCI.”
Note: This article is for informational use only and is not intended to be construed as medical advice. Ask your doctor about issues related to your health and neurogenic bladder, and if Cure Catheters are a good fit for your continence care needs.
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