Partnership Helps Expand Financial Aid to Families in UK

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by Mary Chapman |

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Families of Angelman syndrome (AS) patients in the U.K. have a new resource to help pay for items they could not otherwise afford, thanks to a new partnership between the Angelman Syndrome Foundation (ASF) and Angelman UK.

The partnership, which includes the Canadian Angelman Syndrome Society (CASS), will provide up to $5,000 to an eligible family that applies to the ASF Family Fund.

“Angelman UK is excited to be working collaboratively with the ASF,” Rachel Martin, Angelman UK chairperson, said in a press release. “Both organizations have a long history of sharing the same goal: to support the Angelman community to the best of our ability.”

“Working together along with CASS, this new venture will make a significant difference to our U.K. families and will reinforce positive international networks at a time when the community needs us to work together,” she added.

Through the fund, which was established in 2019, families can apply twice annually for things that would help improve the life quality of the individual with Angelman, a complex neurological disorder estimated to affect 1 in 15,000 people and which causes intellectual and physical disabilities.

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Families can use the funding for communication devices or travel costs to an ASF Angelman Syndrome Clinic, for example, or for equipment for safety or adaptive play. To date, with help from the Fighting Angels Foundation and other grants, support has totaled more than $260,000.

“At the Angelman Foundation we believe that when we collaborate and work together, we can make a bigger impact to support families on their AS journey,” said Amanda Moore, CEO of the ASF.

“The ASF is very proud of the ASF Family Fund and the impact it has had so far on the AS community,” she said. “We are thrilled to have Angelman UK partner with us. Their involvement will amplify the support we are able to give to AS families from diagnosis to cure and beyond.”

Applications are open April 1–30 and then October 1–31. Those who apply for assistance in April will receive a response by the end of May. October applicants will hear from the Fund before December.

Applicants must be the primary caregiver or legal guardian of an Angelman syndrome patient. Funding requests must significantly affect the person with Angelman, and two cost estimates are required for each request. Applicants must show proof of financial need. Also, grantees must wait three years before applying again.

Past recipients include Rhiann, who received an iPad through the Fund.

“Rhiann is making headway with her speech using her iPad,” Ashley Banich said. “She is hitting buttons on soundboard to tell us what she wants, and it is really helping with trips to [Children’s Hospital of Philadelphia]. Thanks again.”

Another family was able, through the Fund, to buy their loved one a Jogger Freedom special needs stroller.

“With this grant, we were able to all run together again as a family,” Vanessa Patterson said. “Our son, Oceano, had outgrown his previous racing stroller and we struggled to find something that satisfied his various needs. Now, we have a stroller that is durable, stable, comfortable, will grow with him, carry his emergency equipment, and make him feel like he’s flying!”