Courtesy
Participants gather for the Walk-N-Roll for Spina Bifida in Las Vegas.
Sunday, Dec. 17, 2017 | 2 a.m.
Breanne Walter, from the Spina Bifida Association
• Title: National Director of Chapter Development and Walks
• Agency address: 1600 Wilson Blvd., Suite 800, Arlington, Va., 22209
• Agency phone number: 310-359-9611
• Agency website: sbaofir.org
• To volunteer: Contact Walter at [email protected] or at sbaofir.org
What is Findlay Good Works?
Good Works is a twice-monthly series in The Sunday in which we highlight the efforts of nonprofit groups that are making a difference in our community. You can check out the good work of more organizations by visiting facebook.com/FindlayAutoGroup.
What does your organization do? The mission of the Spina Bifida Association promotes the prevention of spina bifida and enhances the lives of all affected. We work to make a practical, positive difference every day, helping to improve care so our community can enjoy life to the fullest and expect a better future.
SBA of the Intermountain Region supports and connects communities in Nevada, Idaho and Utah with hubs in Las Vegas and Reno. We put our mission into action in tangible ways — providing resources, aid, connections and a strong voice. Walk-N-Roll for Spina Bifida is our largest annual fundraising event, supporting local community programs, national research and advocacy efforts. People of all ages look forward to the noncompetitive one-mile walk/roll, educational resource fair, games, carnival-like atmosphere and opportunities to connect with other families and individuals affected by spina bifida. This event enables us carry out our core functions:
• Building community networks: We host events that combine fun with peer-to-peer support, build a great social network and create opportunities for sharing experiences. You can attend events such as barbecues, coffee meetings and an annual holiday party.
• Providing special assistance grants: We provide grants each year that help our community with some of the challenges and demands that come from living with spina bifida. Our grants assist families with wheelchair repair, purchasing mobility equipment and helping cover unexpected out-of-pocket medical expenses.
• Empowering local leaders: Our community gets involved at the local and national levels. Every year, we host training for Chapter Advisory Council members and send representatives to the annual National Leadership Institute.
• Advancing advocacy: We host workshops on subjects such as special needs law and navigating your state’s public education system. Together, we advocate to improve your access to care at the local, state and national levels.
• Expanding awareness and outreach: We constantly work to be a powerful voice for increasing awareness of spina bifida.
When and why was it established? Since 1973, SBA has been the only national voluntary health agency solely dedicated to enhancing the lives of those with spina bifida and those whose lives are touched by this birth defect. Its tools are education, advocacy, research and support.
What services might the community likely not know about? We have a dedicated group of people born with spina bifida and parents ready and able to connect people with local resources and information.
What sparked your interest in the nonprofit sector? I started by fundraising for my college triathlon team to travel across the country for the national championships. I really enjoyed hosting fundraising events because of the challenge and relationships that are formed. With an educational background in health, I’m drawn to help lesser-known medical and health-related causes. It is fulfilling to make a big impact in these communities.
What is the greatest success you’ve been a part of? Starting the Nevada chapter and passing the five-year mark as an organization, as well as establishing the Las Vegas Walk-N-Roll for Spina Bifida, which this past October raised more than $45,000.
What can Southern Nevada do to improve our community in general? We need more and better resources and clinics from the medical community, especially hospitals and medical schools, for families with a child born with a birth defect such as spina bifida. Our population also needs greater access to affordable health care.
How can women prevent their children from being born with spina bifida? Women who are old enough to have babies should take folic acid before and during the first three months of pregnancy. Because half of the pregnancies in the U.S. are unplanned, the Spina Bifida Association asks women to take a vitamin with 400 mcg (0.4 mg) of folic acid each day during the years of their lives when they are able to have children.
Women who have a child or sibling with spina bifida, have had an affected pregnancy or have spina bifida themselves, should take 4000 mcg (4.0 mg) of folic acid for one to three months before and during the first three months of pregnancy.
Whom do you admire? I admire the parents who fight relentlessly for their children’s best interests and people with spina bifida who are positive and focused on what they can do.
Anything else you want to tell us? The SBA of the Intermountain Region is beginning a process to ask the medical community to establish Spina Bifida clinics in both Southern and Northern Nevada. Currently, there are few doctors and children’s hospitals with knowledge of spina bifida and neural tube defect prevention, treatment and management. There are no clinics that care for both our pediatric and adult populations in the state. Nevada must begin to establish comprehensive care for children and adults born with spina bifida.
