At just 20 years old, Shoshana Siegel has endured challenges that many of us can scarcely imagine. Born with Spina Bifida, Shoshana has faced a lifetime of medical complexities and barriers, none more heartbreaking than the recent story of her right leg amputation—a decision she was forced to make at just 18 years old. Her journey is one of resilience, courage, and the unshakable will to advocate for others in the Spina Bifida community.

Shoshana’s life took a devastating turn when improper orthotic footwear led to recurring wounds and infections, each more debilitating than the last. Despite countless surgeries and years of painful wound care, the infections persisted. Insurance companies denied her access to properly fitted braces, setting off a vicious cycle that eventually led to the loss of her leg. “If insurance understood from the beginning and my AFOs were made correctly,” she reflects, “I wouldn’t have gotten so defeated.”

Today, Shoshana is a full-time wheelchair user, navigating the physical and emotional toll of her journey. Yet, she refuses to let these obstacles define her. Through her advocacy work with the Spina Bifida Association, she’s persevered and found a voice not only for herself but for others living with Spina Bifida. Shoshana has volunteered with SBA since she was 14 and participated in advocacy events like Teal on the Hill, where she’s shared her story to inspire change.

Fighting for Change: Orthotic Legislation and Advocacy

Unfortunately, the challenges Shoshana faced are not unique. Thousands of individuals with Spina Bifida encounter similar struggles due to inadequate insurance coverage for orthotic footwear and assistive devices. That’s why SBA is leading the charge for vital orthotic legislation—to ensure that people with Spina Bifida have access to the medically necessary equipment they need to live healthy, fulfilling lives.

At Teal on the Hill, SBA empowers individuals like Shoshana to meet with lawmakers, share their personal experiences, and advocate for policies that save lives. Shoshana describes her first experience at Teal on the Hill as transformative: “Seeing how SBA amplifies our voices gave me the confidence to fight for my own needs and inspire change for others.”

The Stakes Are Life and Death

For individuals with Spina Bifida, the consequences of inaccessible or poorly fitted orthotics can be dire. A simple wound can escalate to a life-threatening infection in a matter of hours. “We’re just a number on a piece of paper to some,” Shoshana says. “But those decisions have real-life consequences. They can kill someone.”

SBA’s advocacy efforts aim to ensure that no one else has to endure what Shoshana has faced. But we can’t do it without your help.

How You Can Help

Your support makes SBA’s advocacy and education programs possible. Together, we can:

• Advocate for orthotic legislation that ensures access to life-changing equipment
• Empower individuals like Shoshana to share their stories and drive change through events like Teal on the Hill
• Provide a supportive community where people with Spina Bifida can find strength, inspiration, and hope

Your donation today can change lives. It can ensure that children and adults with Spina Bifida receive the care and tools they need to thrive. It can give a voice to the voiceless and hope to those who need it most.

Join Us in Making a Difference

Shoshana’s journey is a testament to the resilience of the human spirit and the power of advocacy. But her story also highlights the urgent need for action. With your help, we can create a world where no one with Spina Bifida has to suffer needlessly due to lack of access to proper care.

Please make your gift today. Together, we can fight for a better and brighter future for Shoshana and the entire Spina Bifida community.

Thank you for being a part of this vital mission.