All posts by Natalie Abbott

2nd International Symposium on APS Type 1: Registration Now Open

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The APS Type 1 Foundation, Inc. is pleased to invite you to the 2nd International Symposium on APS Type 1 at Stony Brook University, July 13-15, 2017. This 2-day conference will bring together patients, family members, caregivers, clinicians and researchers from around the globe who are dedicated to improving the lives of people with Autoimmune Polyglandular Syndrome Type 1 (also known as Autoimmune Polyendocrinopathy Syndrome Type 1 or APECED). Building on the great success of the 1st International Symposium in Autoimmune Polyendocrinopathy Syndrome Type 1 (APECED) hosted by SickKids in Toronto, Canada in 2015, our hope and goal is that this symposium will continue to increase awareness and advance research of APS Type 1, enhance communication among and within the patient, clinician and research communities, and act as a catalyst for future research, diagnosis and treatment of the disease.

We’ve developed an exciting and diverse program that is designed to interest both the patient and research communities. We are grateful for the support and participation of many key opinion leaders on the subject of APS Type 1. While the agenda continues to be fine-tuned, program highlights include: APECED in 2017: Current Developments and Future Prospects, featuring Dr. Mihalis Lionakis, National Institutes of Health; Responding to Emergencies: Adrenal Insufficiency and Low Calcium, featuring Dr. Olle Kampe, Karolinska Institutet, Stockholm, Sweden, and Dr. Cheri Deal, University of Montreal, Montreal, Canada; Current Thymus Research Panel, featuring Dr. Louise Markert, Duke University, Dr. Audrey Parent, University of California, San Francisco, and Dr. Kai Krohn, Helsinki University Hospital Research Institute, Helsinki, Finland.

The 2nd International Symposium on APS Type 1 will be held on Thursday, July 13th, 2017 through Saturday, July 15th, 2017 at Stony Brook University, Stony Brook, New York.

A welcome reception kicks off the conference on Thursday, July 13th at 6:00 PM, and the last lunch session will conclude by 2:00 PM on Saturday, July 15th. Breakfast and lunch will be served on Friday and Saturday.

With the support of the APS Type 1 Foundation, there is no fee to attend the symposium. In addition, we are pleased to offer a limited amount of financial assistance to family members who are traveling to the symposium. Patients and family members will find an area for requesting financial assistance on the registration form. The deadline for requesting assistance is February 28, 2017, and the Foundation’s organizing committee will contact you to let you know if funds are available by March 15, 2017 .

Because we recognize that for some of you it will not be possible to come to New York for the symposium, we are making arrangements to video tape the program. These videos will be posted on the Foundation’s website following the symposium.

If you can, please bring your children. We have a lot to learn from our children. We will provide kids’ activities in the same building as the conference. You will all have to take care of your child’s medical needs, but we will plan to keep them busy and make sure they have fun.

Register at the following link: http://dklecher.wixsite.com/aps1symposium

Year In Review 2016

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Season’s Greetings,

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.

Fundraising…
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://apstype1.org/serving-awareness/.
Research…
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

BREAKING NEWS! – First APS Type 1 Publication releases from the NIH

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The APS Type 1 Foundation is very excited to share the first publication from the NIH’s Natural History Study on APS Type 1 (APECED).

“Redefined clinical features and diagnostic criteria in autoimmune Polyendocrinopathy-candidiasis-ectodermal dystrophy”

This is the NIH’s first APECED manuscript and has been accepted in the prestigious Journal of Clinical Investigation (JCI) Insight. This is the official journal of the American Society for Clinical Investigation(ASCI) and will provide great visibility to the manuscript and, importantly, to APS Type 1.

We congratulate Elise and Dr Lionakis for their commitment and dedication to this disorder, their tireless support for all of us, and the potential life changing results of this study. I also congratulate all of you that spent days enduring a lot of blood draws and tests to support the results of this study.

As noted in the publication…greater awareness of the new manifestations and diagnostic criteria would accelerate earlier diagnosis by 4 years and possibly prevent life-threatening endocrine complications. This should resonate with all of us that went through many challenging years of not knowing what was wrong with our loved ones and give hope us hope for the future.

Please share with your physician community…the link to the article is also attached below. An amazing day for all those challenged by APS Type 1. THANK YOU ELISE AND DR LIONAKIS!!!!!

Todd Talarico
President, APS Type 1 Foundation

It is available on at JCI Insights website: http://insight.jci.org/articles/view/88782 and as a PDF here.

First International Symposium on APS1 Videos

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In June 2015, the first International Symposium on APS1 was held at SickKids Hospital in Toronto, Canada, with over 100 participants, including 20 APS Type 1 families. Below is a copy of the program with available videos. We look forward to seeing you at our 2017 Symposium!

Friday, June 5, 2015

Welcome and Introductions
Irene Lara-Corrales and Jennifer Orange

Introduction to APS-1

Jennifer Harrington

Diagnosis: When to suspect it, how to make it, genetic counselling

Todd Talarico, Mihalis Lionakis, and Lucie Dupuis

Endocrinology-key issues in managing hypoparathyroidism
Karen Winer

GI: Key issues in managing malabsorption
Peggy Marcon

Problem Solving Panel (Endrocrine/GI): How to work together when complications flare-up
Moderator: Eyal Cohen
Panel members: Pablo Ramirez, Karen Winer, and Peggy Marcon

Introduction to the Dr. Robert P. Orange Lectureship

Keynote Speakers: Lessons from the European APS-1 Registry

Eyestein Husebye

Olle Kampe

Complex care patients: practical tips for physicians and families
Jennifer Orange, Eyal Cohen and Kathy Netten

Autoimmune Hepatitis in APS1
Susan Rubio

Theo Heller

Panel Discussion: Biology and Immunology of AIRE
Panel Members: Jennifer Orange, Michail Lionakis, Mark Anderson and Eric Meffre (no video available)

Current Research in APS1
Michail Lionakis (no video available)

The Impact of APS1 on Quality of Life
Nicolas Kruger

Growing up with APS-1

Julia Band Orange (no video available)

Gaby Talarico

Julia Richardson

An Invitation From The Finch Family

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An Invitation From The Finch Family
As some of you know, our 8 year old daughter, Samantha (she’s quite “something”), has a rare autoimmune disorder called Autoimmune Poly-glandular Syndrome Type 1. This genetic disorder affects only 1 in every 2-3 million people. That’s only about 150 people in the United States. There is no cure and treatments are passable at best. Because this condition is so rare, funds for necessary medical research are scarce. With your help, we’re hoping to raise enough in 2016 to fund a single research grant. In our hearts, we know that there will be a cure in Samantha’s lifetime, but we need your help to make that happen. Proceeds benefit The APS Type 1 Foundation, a 501(c)(3) charitable organization.

​Here are the Details
When: April 23, 2016, 1 – 4 pm

Where: Agoura High School Gym

Who: Friends & family, kids of all ages

​Why: Care about Rare

Website: www.Samanthas-Something.org

Image 3-13-16 at 8.48 AM

APS Type 1 2015…year in review.

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Hello all…
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

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