APS Type 1… A year in review

By December 23, 2011 Uncategorized No Comments

As Christmas and the New Year fast approaches and the hustle and bustle of work slows a bit…it’s a great time to take a moment and thank all those that have made a special impact on your life this past year. Today, on behalf of the APS Type 1 Family…We Thank You!

Gaby was diagnosed with APS Type 1 in 2006 after 6 years of misdiagnosis. As she turns 17 next month we realize how lucky and grateful we are for our family, our friends, our APS Family, and all those who have touched our lives over the past 5 years. It’s been a humbling experience for us and we realize, especially at this time of year, how truly blessed we are to have YOU in our lives. We are especially pleased to report that this year we hit some new milestones…

  • Are small APS Type 1 community has grown to approx 23 families in the US. A disorder like APS Type 1 affects 1 in 2 million so if you do the math…300 million in the US would produce approx 150 people with the disorder. We have shared valuable information with each other over the past year with many of our veteran families assisting those just embarking on this challenging path. I thank you all for your support and wonderful guidance.
  • The message from NORD below…we broke our $100, 000 dollar goal for this year! This is very important because we were holding out to put a larger research grant together for 2012. Breaking $100K gives us the opportunity to launch our 4th research grant in 2012. We have exceeded $230,000 dollars in just 5 years and have research projects in process at Johns Hopkins and the University of California San Francisco We couldn’t have made this happen without all of you! We will be submitting our 4th RFP in the first quarter of 2012 so stay tuned!
  • We celebrated our 5th Driving for a Cure Golf Outing this year with our best year ever breaking $25K. The 2012 Driving for a Cure Golf Event is scheduled for May 18, 2012…mark your calendars! The Seyfert’s also completed the Fifth Annual Three Village Auction for a Cure Basket Raffle setting a new high of $13K this year! Fundraising is what gives us the ability to do the critical research noted above on a little known disorder.
  • Rare Disease Day is Feb 29, 2012. A rare day for rare disease…got to love it. Getting the word out, check out the link attached and the beautiful young lady that NORD has selected to be the poster person on their website for Rare Disease Day in 2012. http://rarediseaseday.us/ This visibility helps to get the word out about the 6000+ rare disorders and some terrific press for APS Type 1 one of the smaller rare disorders recognized by NORD. We can’t thank NORD enough for their support this past year. They give ALL of us a larger voice in the community. Please support Rare Disease Day in your local community!
  • Finally, we ask for your continued support. Most important for your prayers but if you can also give financially we would truly appreciate the support. You can make a tax deductible donation to our website www.apstype1.org You will find in the right corner a link to make a donation that will take you directly to our research grant at NORD. If you have the means to give financially please consider our research grant at NORD.

I’m sure there’s more to share but this is enough. As we say in the APS Type 1 community quite often…we wish you and happy and HEALTHY holiday season. God Bless You All!

The Talarico’s.