2017 APS Type 1 Foundation Year in Review

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Happy Early Holiday Season,

 

I hope I don’t offend anyone talking about the holidays so soon, but I guess we are truly in the throes of the holiday season.   Where did 2017 go?  I’m pleased to share with you the fantastic year the APS Type 1 Foundation has had and let you know about a few fundraising opportunities as you make your holiday plans.

2017 Highlights

  • Thanks to YOUR continued financial support, we funded a $100,000 NORD research project this spring.  This, our sixth grant, was awarded to Dr. Maureen Su, MD, at the University of North Carolina at Chapel Hill for her study entitled, “Thymus transplantation for APS1.” For information about Dr. Su’s lab and the NORD research grant program, click these links:
  • https://rarediseases.org/nord-awards-new-research-grants-for-rare-disease-research/
  • https://www.med.unc.edu/microimm/people/faculty/maureen-su-phd
  • In July, we enjoyed meeting and getting to know so many of you at the 2nd International Symposium on APS Type 1 at Stony Brook University in New York.   With over 150 patients, family members, caregivers, physicians, scientists, researchers and others in attendance,  we had a wonderful two day session on a variety of topics that supported patients and families and gave the clinical and research community time to share their ideas and research with one another.   We very much appreciated all of your feedback about the event, which was overwhelmingly positive.  We will take all of your constructive feedback to heart as we continue to refine and grow these events.  Our goal is to continue to support and organize family and scientific conferences on a regular basis for years to come. We’re pleased to announce that the symposium videos will be uploaded to our website this month. For all those who were unable to attend, please take the time to enjoy the event on-line.
  • As we close out 2017, we are continuing to work on the natural history study registry (stay tuned for more information about that in early 2018) and we are preparing for a complete website redesign that we hope to complete next year.  If you’re a technology buff, a social media maven or just love the internet and want to help, please contact me.  As an all volunteer organization, we can use your help.

 

Fundraising Opportunities – Please help us by spreading the word.

  1. Amazon Smile – as you purchase all those holiday gifts for friends and family, consider ordering through the Amazon Smile platform. It’s simple: just log on to https://smile.amazon.com/ and put our foundation’s name in your account.   The foundation will receive a small portion of the proceeds from everything YOU spend!  So far, Amazon was donated over $62 million to registered charities.  With your help, we can raise our profile among these charities.
  2. Ordering Holiday Cards? – If so why not Cards for Causes?   Picaboo Cards will donate 50% of your purchase to our foundation when you order through them.  You get to customize the front of your card with your own photo.  The back of each card will have our logo and a small foundational message.   This is a great way to help the foundation and still send beautiful cards of your family to those you love.  https://www.picaboo.com/cards-for-causes/aps-type-1-foundation/ Share with this great opportunity with friends and family!
  3. Serving Awareness Dinner – If you are planning a dinner event over the holidays, make it a Serving Awareness Dinner!   All the materials you need are located at http://apstype1.org/serving-awareness/ with an easy point, click and print.   Your friends and family will be happy to support the foundation after the incredible dinner you provide.  If you don’t like that, make it a lunch date!
  4. Company Matching – Many employers match their employees’ charitable donations.  The foundation is a non-profit 501(c)(3) organization.  We’ve  been getting a lot of company matching this year from a variety of organizations.  If you are looking for a great way to increase your financial support, ask your organization about company matching.
  5. Our Website – If you’re not excited at any of the items above, how about a simple tax deductible donation on our website?  This link below will take you right to the donation section of our website.   http://apstype1.org/donate/ Remember the organization is 100% volunteer, so all the funding goes back into the direct support of foundation activities!

We have a lot to give thanks for this holiday season. ALL that we do would not be possible without ALL OF YOU!  The APS Type 1 Foundation’s board would like to thank you for your continued support. We hope and pray that you and your family have a happy and healthy holiday season.

Season’s Greetings!
Your APS Type 1 Foundation Board
Todd Talarico MS
President, APS Type 1 Foundation

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