APS Type 1 Family and Friends,
Well, it’s hard to believe we just flew through another year. It’s that time of year that requires us to slow down and think about the wonderful gifts we received this past year and to set goals for the year ahead. This was an exciting year for the Talarico family and many of our friends in the APS Type 1 community…here’s just a snapshot of some of the things we are giving thanks for this year…
A look back:
- We had 108 golfers at the 8th Annual Driving for a Cure Golf Outing this year and we broke yet another record raising $36,000 which was $4000 above the year before. This event continues to grow and we can’t begin to thank everyone who supports us each year at this event. We had a Harley Davidson for the Hole in One this year…everyone had a lot of fun taking pictures around this beautiful bike…as you can see. Mark your calendar for our next outing…May 16, 2014
- Even though Hurricane Sandy ripped through Long Island end of 2012, that didn’t stop Sherri and Dave Seyfert from having their fundraiser. The Three Village Auction for a Cure continues to set new fundraising records and the Seyfert Family continues to come up with creative approaches to driving our research funding. Thank you!
- We continue to hear wonderful news from our 4th Research Project out of the University of California San Francisco. Dr. Anderson and his colleagues are working on infant testing that would help diagnosis APS at infancy. All of us have lived with the challenges of incorrect diagnosis so we know this will be a big opportunity to support the newly diagnosed.
- Gaby and many of our young APS’ers headed off to college this year. Our group stays very connected and I’m always amazed at what we learn from each other…I’m also very excited that our children are staying connected as well. It’s important they support one another and it’s great to see the friendships they are building through their Facebook page. APS Type 1 “The Next Generation”
- We had the opportunity to work with Genzyme this past year and through their “Running for Rare Diseases” Group and our marathoner, Lisa Valaika, we were able to raise money directly for APS Type 1. Although this run had a tragic ending, I’m still amazed at the love and support for the Rare Disease community from this group and thank Lisa for her fundraising support. To see more about this team go to… http://runningforrarediseases.org/
- Finally, Gaby and many other APS Families took a trip to the NIH this past year to be registered for an APS Type 1 research study. This is a great opportunity for us to gain valuable insight into this challenging condition. Special thanks to Dr. Lianokis and his team for their support!
A look ahead:
- Thanks to Jim Sanders and our friends at the Hypoparathyroidism Group we will have a carve out mini-conference to discuss APS Type at their upcoming annual meeting on June 5th in California. Dr. Anderson (noted above) will be attending and speaking specifically about APS Type 1. This is a great opportunity for us so if you can add it to your plans this year please do so! The event is the 8th International Hypoparathyroidism Patient conference and it will be held June 5-7th in Sacramento, CA. For more information please go onto the link provided. We are attending as guest speakers…hope to see you there! www.hypopara.org
- Sherry and Dave Seyfert remain vigilant with our friends in DC and we are hopeful that 2014 brings news that we are finally registered as a non-profit organization! It’s a labor of love but the end is near!
We continue to thank NORD for all their support…this year we exceeded $300,000 in our APS Type 1 restricted research grant since we started it in 2007! If you would like to support our efforts please make a tax deductible contribution through our website.
Please come join us this year in any way you can as we continue our journey to find a cure for APS Type 1.
From our family to yours we wish you Peace, Happiness, and Good Health this holiday season. Merry Christmas!