Hard to believe that we are already writing a year end newsletter for the APS Type 1 Foundation. This year has certainly moved quickly. We have a lot to be thankful for this year and want to share 2016 highlights and give you a quick look at what’s in store for all of us in 2017.
We celebrated our 10th anniversary of two special fundraising campaigns, the “Driving for a Cure” Golf Outing and the “3 Village Auction for a Cure.” These events again contributed over $40,000 towards the foundation.
The Finch Family launched their “Slam Dunks for Sam” event in California, which had fantastic participation from many supporters in the California area. For their first event, they raised over $60,000!!!
We launched the “Serving Awareness Campaign,” which is a fundraising dinner program that you can have at your home to support APS Type 1. We developed a full kit of tools and resources to support your event. It’s our hope that this campaign enables you and your friends and families to easily support the foundation and have fun doing it. No dinner is too small or too large. Here’s a link to our website to help get you started: http://aps1.wpengine.com/serving-awareness/.
We launched our 5th Research Grant RFP for $100,000 through NORD and are waiting for the responses to our research request…we should have a confirmed APS Type 1 Research Project in March of 2017.
Dr. Michail Lionakis and Elise Ferre, P.A. published their first paper on the work they are doing at the NIH, which is currently treating over 70 APS Type 1 patients…just one highlight of the paper is possible new protocols for diagnosis that previously were not identified. You can read the full paper here.
Dr. Lionakis, Dr. Mark Anderson from U.C. San Francisco, and Dr. Dana Orange from Rockefeller University all agreed to join the foundation’s Scientific Advisory Board. We are very grateful for their support and look forward to close collaboration in the future.
Awareness and Education…
We successfully submitted an application to participate in a natural history study registry project with NORD funded in part by the FDA. Your board members, Robin Finch and Jennifer Orange, are working hard to fulfill the requirements of this project. We expect to launch the registry with NORD in 2017. This is just a first step toward a more ambitious goal of establishing a bio-bank to further support research efforts.
We have supported and facilitated key opinion leader calls that bring together global thought leaders in the area of APS Type 1 so that the researchers have opportunities to share their work and discuss opportunities for collaboration. We are working with them to roll out an Addison’s Crisis communication plan.
Looking ahead to 2017…
International APS Type 1 Symposium for Physicians and Families! Your board is hard at work preparing for the 2nd APS Type 1 Symposium, which will be held July 13th to 15th in Stony Brook, NY. Thanks to the work of Dave and Sherri Seyfert, we have secured an amazing location at Stony Brook University. We have thought leaders from around the world attending. Dr. Lionakis from the NIH will be our Key Note Speaker, and the Alan Alda Center will be providing a communication program for physicians and families. This time, we will have specialized sessions for physicians and families on a variety of topics so there will be something for everyone! (The Save the Date is here) The Symposium registration will be available on the website in January.
Official launch of the Serving Awareness Campaign – We now have all the tools available on line for you to have a successful event with your family and pass it on. This is our “Bucket Challenge” and we’ve set a goal to raise $100,000 dollars in 2017. Please visit the website and plan your event. Last month, Jennifer Orange and her family had a chili competition in Toronto judged by the local Fire Department. A great event that supported Julia and provided visibility and financial support for your foundation.
We have a lot to give thanks for this year and we are excited about the year ahead. If you are passionate about what we do, we welcome any and all support! If you don’t have the time, but want to support our efforts financially, please make a donation online at www.apstype1.org.
On behalf of the APS Type 1 Board and our APS Type 1 Families…we wish you and your families a happy and healthy holiday season.
Happy Holiday’s from your APS Type 1 Board of Directors.
Todd, Heather, Jennifer, Robin, Sherri & Dave
PS…If you still have some shopping to do this year…please shop on amazon smile and support APS type 1 with each purchase. We are a registered foundation. Here’s the direct link. Smile.amazon.com/ch/32-2401819Year In