Action For Aidan

08/14/2024

After over a decade of fundraising, Action for Aidan will be coming to a close as a nonprofit.

Aidan, and our family, will forever be grateful for the time, money, energy, and love you have given us. The community of Aidans Army will forever resonate in our hearts and souls.

With your help we have raised close to $700,000 dollars for research over the past decade.

Aidan is now 16! There was a time where we did not know if he would be alive as a teenager.
He is in his third year of a clinical trial, still receiving weekly enzyme therapy. We are hopeful this drug will someday be approved by the FDA. The drug has altered the course of Aidan's disease. He has a summer job, he was part
of a crew team this spring, he is starting to learn to drive; accomplishments and a journey we never imagined at diagnosis.

Recent Action for Aidan funds have gone towards supporting development of a teen room at the UNC Research Foundation for MPS, pioneered by Dr. Joseph Munezer, a long time guru in Hunter Syndrome. Featured below is Aidan handing $200K to Dr. Munezer to support this teen room - a place where families, newly diagnosed with Hunter syndrome, will come for treatment and
expertise. The funds will in part be used to sponsor families to come to the center for treatment.

Over the past year, Action for Aidan has also partnered with Project Alive, to fund much needed Consensus papers establishing
new standard of care guidelines for Hunter Syndrome for physicians to access throughout the world.

For continued support of Hunter Syndrome research and advocacy please consider connecting with Project Alive.

Thank you Aidans Army for your advocacy and support.

With gratitude,
The Carters and the Action for Aidan Board

05/08/2024

Excited to partner with Project Alive on such important work!

Back To All Press Project Alive and Action For Aidan partner with $400,000 towards scientific endeavors for Hunter syndrome May 6, 2024   Project Alive, a national Hunter syndrome research and advocacy organization, has partnered with New Hampshire based non-profit, Action For Aidan, to collaborate...

07/26/2023

Dear Action for Aidan Community,

Today, in celebration of Aidan’s 15th Birthday, we are excited to share an update with you - our amazing community!

In 2014, Action for Aidan came to life with one clear mission:
To Cure Hunter Syndrome.

At that time, when Action for Aidan was created, there were no clinical trials, no extended research, and there was very little hope. Remarkably, Action for Aidan has since raised close to $700,000. This effort has been powered by you - Aidan's Army!

Over the past two years, Big Pharma has stepped into the Hunter Syndrome space and Aidan is currently participating in one of several clinical trials that are now available to Hunter Syndrome patients. Because of this, Action for Aidan is now gifted with the ability to broaden our mission; to improve the quality of life for boys and their families impacted by this relentless disease while we continue to search for a cure.

Aidan, along with the entire Hunter Syndrome community, continues to inspire us every single day! For all that has evolved over the years, one thing has remained constant; our enduring gratitude for you – our incredible supporters – who we humbly refer to as Aidan’s Army.

We have so much more to do, and we cannot wait to share it with you. We are forever grateful for your support and we know that together, we can make a difference.

“Once you choose hope, anything is possible.” ~ Christopher Reeve

With Hope and Gratitude,
Action for Aidan Board of Directors
Jennifer Carter, Marci Francis, Sarah Galligher, Julie Shaheen

11/20/2022

$200,000. 200 ...thousand.... dollars. When we prepared to donate this money to Project Alive we did so with great care, thinking about each and every one of you. We thought about every birthday candle you bought, every race you came to, every marathon runner you supported, every ounce of love you sent as we searched for Cookie, piggy banks donated, vegetable stands set up, giving Tuesday donations, and challenges upon challenges you have accepted. $200,000 came through the hard work of SO many. It is a reminder that when we do "small things with great love" we can reach the unimaginable. Thank you , for those of you that are loud and for those of you that are silently in the background. Each of you made this possible.

We are thrilled to share that we recently granted $200,000 to Project Alive to support research for a cure! Together we can find a cure for our boys!!

We could not have done this without the incredible support and love from ! 💜🫶🏼🙏🏼🫶🏼💜

https://sites.google.com/view/action-for-aidan/about-us/media?authuser=0