The Angelman Syndrome Foundation Has A New CEO, Amanda Moore.

I recently had the opportunity to chat with Amanda Moore, the new CEO of the Angelman Syndrome Foundation right before one of the biggest events of the year, the biannual ASF Family Conference!

Amanda is no stranger to Angelman Syndrome. She is a Mom to twin boys, Jackson and Baden. Jackson has Angelman Syndrome.

We have all been through that devastating day of getting the diagnosis. It is heartbreaking to receive information about this severe genetic condition that will require the life long care of our sweet Angels. We mourn the loss of all of the ideas we imagined their life would lead. Instead, we are forced into a whole new world of special needs trying to navigate the waters without a map. The time it takes for parents and caretakers to cope with the diagnosis and try to best manage all of the challenges that come with AS is different for everyone.

It has now been a few years since Amanda and her husband, Adam learned that Jackson had Angelman Syndrome. Shortly after they received the diagnosis and had time to process it all she had a moment in the shower where she had reached the end of her sadness. She was faced with a choice. She could either continue to wallow in pity or get up and support Jackson by any and all means necessary. Her purpose had suddenly become clear. She has experience in fundraising, equality, and inclusivity. “I want to help,” she said, “I want to help support the ASF and raise support for families on this journey.” She quickly volunteered to host the Angelman Syndrome Foundation Walk in Indianapolis. This is a huge task to host the ASF’s biggest fundraiser of the year, which happens in many cities across the US and now in other countries around the globe! If you have not yet been to an Angelman Syndrome Foundation walk, it is a wonderful day to meet other families who truly understand your daily struggles, they share the unconditional love for our sweet Angels that are sometimes not so “angelic”, and share the same hope for a happy, healthy, and more inclusive life for our loved ones with AS. We highly recommend you make plans to attend the next walk anticipated in May. Registration typically opens in January.

Amanda met many families and formed relationships with them through this event and her desire to help more AS families continues to grow.

In her new position as CEO, she wants to be able to provide support for families from Day 1 of diagnosis – to potential treatments, covering every topic from walking to communication; all while managing the expectations of families. She advises “As you read through Facebook posts remember that ALL children are different and every child develops differently.”

Her plan is to continue the ASF’s mission to fund scientific research and she is hopeful for a curative for the symptoms of Angelman Syndrome.

As a fellow parent, I have to tell you that I was excited by her enthusiasm. She truly exuded her passion for our community during our conversation. This was clear to me. We really bonded over having an optimistic attitude towards this life of AS. She said, “The good days will outweigh the challenges.”

Her hope is that Jackson can live in a world where he feels included, can live independently and contribute to society.

One of her first videos on The ASF social media was to introduce herself and ask our community for feedback, she wants to hear from you. “Email me, DM me, I am accessible – I want the community to reach out.” Amanda wants to meet you where you are on this journey.

Thank you, Amanda, for this interview and the opportunity to share your story with our community! The future for our loved ones with AS is going to be even brighter as your passion and talents join the ranks of so many others that have been working diligently to better understand AS and research treatments.

For more information about Amanda Moore visit: https://www.angelman.org/about/