Questions? Contact Kathryn Ely kely@angelman.org.
Every Angelman family has different needs, challenges, dreams, and goals. That’s why there are three Family Support Funds designed to provide meaningful support in different ways.
Whether you need help getting a medical device, creating time to rest and recharge, or having an experience that can make a lasting impact, there’s a support fund that can help.
Applications are accepted annually October 1–14.
Families may receive one grant every three years.Â
ASF Family Fund
Apply for funding to gain access to something that will improve the quality of life of an individual with AS.
Commonly funded items include: Safety beds, iPads, adaptive bikes & strollers, medical equipment, travel costs to an ASF Clinic, and various therapies. Depending on the request, some items are directly funded and some are funded through reimbursement.
Funding Limit: $2,500
SEE DETAILS
Respite Fund
The Respite Fund provides financial support to help create a meaningful respite opportunity.
Funding can allow you to step away from your caregiving responsibilities, spend time with your partner or other children, pursue something that brings you joy, or simply take time to rest and recharge.
Funding Limit: $1,000
US Applicants Only
DETAILS COMING SOON
Sophie Burdine-Schwartz Impact Fund
Apply for funds to support something that makes a meaningful impact in the life of your individual with Angelman syndrome. Not a clinical need, but something that would make their life happier.
Possibilities: Travel and family experiences, recreation memberships (pool, children's museum), streaming and entertainment.
Funding Limit: $1,000
US Applicants Only
DETAILS COMING SOON
Eligibility for Funding
To be eligible for funding.
- Applicant must be a caregiver (legal guardian, primary caregiver, etc) for an individual diagnosed with Angelman syndrome.
- Request must impact an individual with Angelman syndrome or their caregiver.
- Request cannot be for rent, utilities or moving expenses.Â
- Applicant cannot have received a grant in the last 3 years. Example, if you are awarded during the October 2021 grant cycle, you would not be eligible to apply again until the 2025 grant cycle.
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NOTE: The total requested amount for funding may not be met. See funding limits for each grant award.
FAQs
Who can apply for ASF Family Support Funds?
Any caregiver, parent or legal guardian of an individual with Angelman syndrome.
When are the applications open?
Applications are open October 1 – 14.
Applicants receive a response within 8 weeks of the application deadline.
What documents are needed to submit an application?
You will need to be prepared to submit the following information electronically:
- Formal proof of diagnosis
- Insurance denial for any Durable Medical Equipment (DME), including safety beds and communication devices
- An impact statement of how this grant will benefit and enrich the life of the individual living with AS (200 word minimum)
- Detailed estimates or invoices that provide an item description and clearly lists the cost of the item you are applying for
- Specific details of the item you are applying for (color, size, style, etc.)
What can the ASF Family Fund grant be used to pay for?
You may use the ASF Family Fund grant to pay for anything that would benefit and enrich the life of an individual with AS.
Common items are:Â
- Travel expenses to an ASF Clinic or other specialist (Note: ASF legally cannot pay for the actual cost of the visit itself)
- iPad for communication device
- Safety beds (Note: You will have three options to choose from. If you would like something besides what we offer, we can reimburse up to $2,300 for the bed
you select) - DMEs not covered by insurance
- Therapy co-pays not covered by insurance
- Adaptive bikes
What can the Respite grant be used to pay for?
Apply to the Respite Fund to help take care of yourself as a caregiver. It’s important to rest and recharge, attend your own medical appointments, spend time with other family members and address personal or work obligations.Â
Funding may be used for approved respite services, including:
- In-home respite care
- Community-based respite programs
- Qualified respite providers
- Short-term caregiver relief services
What can the ASF Sophie Burdine Schwartz Fund grant be used to pay for?
Apply for funds that bring joy and happiness to an individual with Angelman syndrome.
- Travel and family experiences — helping a family visit grandparents or relatives they’ve never been able to afford to see.
- Recreation memberships — a family pool membership, a YMCA membership, or a year-long children’s museum membership.
- Streaming and entertainment — something as simple as a Disney+ subscription for a child who lights up watching movies all day.
- Everyday joys — bikes, outings, and experiences chosen because they’d make that person smile, not because they check a therapeutic box.
What are the limitations for funding?
- Each grant must be made for a charitable purpose as described in sections 180(c) and 501(c)3 of the Internal Revenue Code.
- The total requested amount for funding is limited to $2,500 for the ASF Family Fund per grant award and $1,000 for the ASF Respite Fund and ASF Sophie Burdine-Schwartz Award. If your requested item is more than $2,500, you may still apply. If awarded, the ASF Family Fund can reimburse you up to $2,500 toward your requested item.
- Some grants may be funded by reimbursement.
- Applicants can submit only one application at a time.
- Recipients for prosthetic appliances, wheelchairs, beds or other forms of physical or educational assistance; necessary travel reimbursements for clinic travel; or other needs that prove to be worthy of funding, provided there are no other funds, public or private, available for the needs of such individuals.
Can I use the ASF Family Fund grant to travel to an ASF Clinic or specialist?
Yes! If you would like to use it to cover expenses to travel to an ASF Clinic or specialist, please make sure that you have already contacted the clinic. You will need to ensure they have the ability to see you within six months of the submitted application and that you can cover the cost of the medical visit.
When will we know if our application was approved?
You will be notified via email within 8 weeks of submitting your completed application.
When will the grant need to be used or items ordered?
All items will need to be ordered within three to five months of receiving your grant award. If you will not be able to purchase the items within that time frame, please wait and apply during the next round.
How often can I receive an ASF Family Support Fund grant?
You may only be awarded a grant once every 3 years. Three years after receiving your grant, you may apply again. Example, if you are awarded during the 2023 grant cycle, you would not be eligible to apply again until the 2026 grant cycle.