Today we’d like to introduce you to Angela Kramer-Healy.
Hi Angela, can you start by introducing yourself? We’d love to learn more about how you got to where you are today.
When my youngest daughter was diagnosed with neurofibromatosis (NF), it changed my trajectory forever. (NF is a genetic disease that causes tumors to grow anywhere throughout the body.) At a loss about navigating this news, I began raising funds for research for an organization whose focus was just that. When my daughter was three years old, I had to make the hardest decision in my life. After multiple surgeries, it was decided to go ahead and perform enucleation of her left eye. Because of all of the medical appointments and surgeries, we had multiple fundraisers to help with costs. At the time, she was getting an MRI under anesthesia every three months.
I became heavily involved over the years and realized that while research was needed, many families across the country desperately needed financial support, just like us. Hence, the Seventeen22 Foundation was created.
This organization began in 2019, right before COVID-19 shut things down, so we have been building things at a slower pace to ensure that the funding is sustainable and that we have the greatest impact possible for these families. We have grown from simply having a Family Aid Grant program, which provides financial assistance for families to cover medical costs, transportation to and from doctors’ appointments, and rent/mortgage assistance. Every family impacted by NF has a different need, so our team meets quarterly to go through applications.
We have grown the organization to now include a scholarship fund for those with an NF diagnosis and their siblings who are going to college or a trade school, a Birthday Celebrations program, and a PJs for the Holidays program. This past holiday season, we were able to provide 866 pajamas to NF families in 45 states across the country.
Alright, so let’s dig a little deeper into the story – has it been an easy path overall, and if not, what were the challenges you’ve had to overcome?
Starting a non-profit organization can be a fulfilling experience, but it comes with its own set of challenges. One of the biggest obstacles that we have faced is letting families know about our existence and the help we can offer them. Another challenge has been obtaining funding. Since we are a new organization, it is challenging to secure funding as most donors prefer to support established non-profit organizations. Despite knowing that families need our support, it is challenging to compete with larger non-profit organizations that have become household names. It is especially difficult for us since one in every 2,500 people worldwide is diagnosed with NF.
Great, so let’s talk business. Can you tell our readers more about what you do and what you think sets you apart from others?
“The Seventeen22 Foundation is a unique organization that provides funding exclusively for families affected by NF across the United States, along with a range of additional programs. This sets us apart from any other NF-related organization. We offer an online application which is open to anyone with an NF diagnosis.”
Contact Info:
- Website: www.seventeen22.org
- Instagram: https://www.instagram.com/seventeen22_fdn
- Facebook: https://www.facebook.com/seventeen22foundation
- Linkedin: https://www.linkedin.com/company/seventeen22foundation
