Join us for a FUN evening to support Audrey’s journey toward gene therapy treatment with our Cure CASK Campaign. YOU can make a difference!
Our goal is to raise $100K and give Audrey and other children affected with CASK a chance to be the best that they can be. We are working with UC Davis to reactivate the X Chromosome that is not working and significantly improve Audrey’s health. This is a real possibility within the next few years. We are in Phase II of our fundraising campaign and we need your help, so thank you for being a part of #audreystory
I know I have not posted in awhile, been a bit busy since I started working full time again since my last update. In that time, I was asked to join as a Director on the Angelina Cask Neurological Research Fund (ACNRF) for their USA Not for Profit. ACNRF also has an Australia Fund est. 2020, and the US one was started a few years later in 2022. Angelina has a CASK diagnosis just like Audrey. She is the daughter of Giovi & Charles, who asked me to come on board for the US fund.
I joined ACNRF USA because I believe in their mission of finding a cure for CASK based on research and therapeutic approaches. You can read more about ACNRF here https://acnrfusa.com/
ACNRF has partnered with the UK Cask Research Foundation and the Association Enfants CASK France to raise enough money to fund a promising research project that aims to cure CASK gene disorders by activating a backup copy of CASK in girls. Alot goes in to starting research projects. ACNRF and the UK & France foundations have been working with UC Davis on this Cure CASK Campaign which you can see a video about on the link above under the Research tab.
Imagine if we do raise enough money to start this project, go through the trials and eventually it will be a 1 shot injection and Audrey will be even farther along than she is now and dare I say, talk and so much more, I get so excited thinking about it, but know we have a long way to go. So if you can help spread the word, come to our fundraiser or donate here, we can start this journey! Audrey has already inspired so many with her determination and hard work. Like I said in one of my original posts, I know she will change the world!
Jimmy & I are planning on hosting a big fundraiser soon so stay tuned on how you can come out and support to help find a Cure for CASK. In the meantime, you can donate using this link and let’s find a cure for CASK and help Audrey and all our CASK kiddos be the best they can be! #audreystory
Audrey started Camp Anchor this year and it is the most magical place on Earth! It is in Lido Beach in the Town Of Hempstead. She goes for 6 weeks and they do the most amazing things! Each counselor, volunteer and staff member is so loving and caring and you feel it as soon as you walk in!
To learn more about Camp Anchor please visit www.campanchor.org
Check out Audrey surfing for the 1st time! The look on her face says it all!
Audrey is the type of girl that never quits! She works hard every day. She gets therapy 7 days a week. So when doctors told us that she would never walk, we like to prove them wrong.
Here is Audrey walking the NYPD Brooklyn North 5K with her awesome Daddy! No one can stop her!
Audrey walking the Brooklyn North 5K with her Daddy, cousin Duke and sister Vivienne!
