Despite Inflation, Financial Support for Angelman Families Is Out There

Angelman Syndrome Foundation grants have helped many, including my Angel

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

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It’s no secret that rising costs and inflation continue to pose financial challenges around the world. Fortunately for families living with Angelman syndrome (AS), the Angelman Syndrome Foundation (ASF) continues to affect lives through its Family Fund grant. Awards of up to $5,000 are possible.

The second of this year’s Family Fund biannual applications is only open until tomorrow, Oct. 14. The next application window is April 1–14, 2023. The grants may cover many needs, including iPads for communication, travel to Angelman clinics, safety beds, therapy, and durable medical equipment not covered by insurance.

I enjoy giving shameless plugs for all of the wonderful gifts that the Family Fund bestows upon families like mine. By gifts, I mean the treasures of support provided in the form of conferences, reference information, and specialized clinical care for those with AS.

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What was I waiting for?

I’m a regular reader of the ASF newsletter. Year after year, I read about the Family Fund and felt that we probably wouldn’t qualify. Finally, I decided to apply when the fund application opened in April 2021. It was a last-minute decision, and I’m glad I acted on it.

I’d just finished reading the 2018 Angelman Syndrome News column “The ACC Learning Curve.” In it, Mary Kay tells the story of how her daughter, Jess, began using her iPad to communicate. I felt that it was time to take this step for my daughter Juliana and that the Family Fund could help us get started.

It wasn’t a difficult application to complete. I provided proof of Juliana’s diagnosis with details and estimates of the iPad we wanted. The impact statement rounded out the application, and I explained the important role a dedicated Talker, or augmentative and alternative communication device, would play in her life.


It didn’t take much time to gather all the information needed to complete the application. Juliana’s paperwork is organized in a dedicated file drawer for such purposes. In six weeks, we received news of our award.

I didn’t delay in purchasing Juliana’s dedicated iPad and the app that would transform her device. Learning to use a Talker takes time, but I know we’ve taken a huge step in giving Juliana a formal way to communicate. Having a voice means a lot for an Angel who doesn’t say words in a traditional sense.

When Kay wrote her article in 2018, she couldn’t have known the impact it would have on my 12-year-old Angel, Juliana. Today, I hope to do the same for a caregiver who’s been hesitant to apply for the Family Fund. Angels need a lot of care, and dollars need to stretch really far right now.

It sounds like the perfect time for a gift.

Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Angelman syndrome.


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