Well…it’s that time of year…time to provide you all a quick update on The APS Type 1 Foundation…2015 has been a year of change and we are excited about where we have come and what lies ahead in 2016. Here are a few highlights from this past year.
- New Foundation Board Members – The Foundation is heading in the right direction and I’m pleased to report that we’ve added two new members to the Board of Directors. Sherri and Dave Seyfert continue as Founding Members and Sherri has accepted the role of Treasurer. Heather and I remain on the Board and I have accepted the position as President for 2016. We’ve added Robin Finch who joins us from California and has taken the role of Secretary, and Jennifer Orange has joins the Board from Toronto. Robin’s daughter, Samantha, and Jennifer’s daughter, Julia, have APS Type 1. They bring a wealth of knowledge and experience to the group.
- The 1st APS Type 1 International Symposium – Thanks to the partnership between Dr. Irene Lara-Corrales of SickKids, Jennifer Orange, Pat Band, and their family and friends, in June we had our 1st International APS Type 1 Symposium. It was attended by researchers from around the globe as well as 20 APS1 families. It was truly a 1st on many levels….It was a first to have that many families in one room. It was also incredible to see leading researchers from Sweden, Norway, Yale, NIH, SickKids Toronto, and UCSF sit around a table and discuss ways that they can work more closely together to find new treatments and a cure. Not in our wildest dreams did we think we would ever have this wonderful experience and Pat and Jennifer with the help of Sick Kids Hospital in Toronto pulled together an amazing event. Stay Tuned…the Board is working on finalizing a location for our second symposium that will most likely occur in Stony Brook NY. We are tentatively planning for June of 2017. As soon as we have logistics, we will let you know.
- Driving for a Cure Golf Outing – After our first rain out in 8 years, we had a wonderful Driving for a Cure Golf Outing in May with beautiful weather and a great turnout of over 150 people! We raised approx $30k at this year’s event. We are having our 10th and final outing May 13, 2016…for now Heather and I are going to focus on the Foundation and other fundraising activities. So don’t miss this year’s event…it will be one you won’t want to miss.
- Three Village Auction for a Cure – Sherri and Dave Seyfert will be running their 10th event in 2016. They have averaged over $10K a year on their event on Long Island NY. This will be their last event as well so stay tuned for more information on the website this year! Thanks Dave and Sherri and your extended family for running such a successful project in support of all those with APS Type 1 and your son Matthew.
- APS Type 1 Researcher Call – This past November Jennifer Orange orchestrated our first research conference call where leading researchers talked about registry options, alert communications for hospitals and other topics. The Foundation will continue to work to link research physicians together from around the world so we continue use to learn from one another as we discover more and more about this complex disorder.
- Coming Soon – Finally, the Board is hard at work on a number of projects…a new fundraising program, solidifying our financial platform and state fundraising paperwork, membership with NORD and GlobalGene Foundations where we can gain valuable knowledge from other foundations that have walked ahead of us, registry options, 2017 symposium planning, and many other topics. We are trying to keep the list small each year so we do critical projects and we do them well.
During this holiday season and end of year 2015 we want to wish you and your families Peace, Joy, and Good Health! We hope the new year is a time of renewal. If the holidays didn’t hit the pocket too hard, we continue to ask for your financial support as we take on new projects for 2016. You can donate in 2 different ways…
– Directly to our restricted research grant with NORD at www.apstype1.org on our fundraising page. (Go to the fundraising tab for direct link to NORD)
– Contribution directly to the Foundation…you can mail a check made out to The APS Type 1 Foundation directly to Sherri Seyfert at PO Box 404, Stonybrook, NY 11790. (We will have the Foundation up with credit card capabilities in 2016.)
Both approaches are tax deductible!
From our Families to Yours….Happy New Year!
The APS Type 1 Foundation Board of Directors
Todd & Heather Talarico, Robin Finch, Jennifer Orange, and Sherri & Dave Seyfert