2013 Annual Report.....A Year In Review 

(pdf version)

Organization Overview

The HypoPARAthyroidism Association, Inc. is a voluntary, non-profit organization dedicated to improving the lives of people with all forms of hypoparathyroidism, a rare medical disorder, by maintaining a worldwide network of support, and promoting public, as well as professional, awareness of this disorder through education with our website, quarterly newsletter, periodic conferences and webinars; and fundraising to support research.

We are a tax exempt, non-profit Corporation in the State of Idaho and with the IRS under Title 501(c) (3) of the IRS Code. Any contributions are considered to be tax-deductible within the United States.    Our non-profit tax-exempt EIN is:  82-0505424

 

Board of Directors, December 2013

James Sanders, Chair, Idaho                                              Carol Sanders, Treasurer, Idaho     
Julie Hunsaker, Assistant Chair, Idaho                               Michele West, California
Lorraine Bolton, Secretary, Idaho                                       Gwynneth VanLaven, Virginia
Roger Evans, Board Member Emeritus, Colorado           Jim Sliney, Jr., New York

 

Message from the Board

19 years after the first Hypoparathyroidism Newsletter, NPS Pharmaceuticals submitted their request to the FDA, Food and Drug Administration, for NATPARA (PTH [1-84], making it the last of the endocrine gland to have its own hormone replacement therapy.  This has been something foremost on the thoughts of hypoparathyroid patients worldwide and high on the agenda of the HypoPARAthyroidism Association from our beginning in 1994.

Sitting back and reviewing the highlights of the previous year has always been therapeutic for us.  For one thing it gives us the opportunity to sit back and take another look at what we tried to accomplish, and, more importantly, what we actually were able to accomplish.  In retrospect, it gives us an opportunity to see the results of the work we undertook so many years ago.

During 2012 over 350 patients with hypoparathyroidism participated in the Paradox survey, to try and define in real terms the full impact hypoparathyroidism has people’s lives.  This survey will help physicians to better understand how hypoparathyroidism affects the individual patient and their quality of life.  Even though most patients with hypoparathyroidism “don’t look sick,” physicians will now be able to see, based on the Paradox results, that there are burdens associated with this disorder, and they are significant in their totality.

The results of the PARADOX Study were highlighted during the 2013 Endocrine Society meeting in San Francisco, California to a standing room only audience.  The PARADOX study was a milestone study which defined the myriad of symptoms commonly experienced by patients who had been diagnosed with the disorder.  Research physicians increased their efforts not only to understand the effect of PTH (1-34) had on patients receiving the therapy.

We continued to work with the Office of Rare Disorders at the National Institutes of Health, NIH, who asked us in 2011 if we would participate in a pilot program for the Global Rare Disease Registry, GRDR.  Once the GRDR has been fully implemented the medical community will have access to a wealth of de-identified information which will eventually enable them more completely understand rare medical disorders in a way never before possible.

We have been working on upgrading our registry, which will be fully implemented early in 2014. The registry we originally created when the HypoPARAthyroidism Association began in 1994 made it possible for medical researchers to understand the disorder in ways never before possible and helped change their understanding of the disorder and the impact it has and can have on our lives.

One of the ways our registry helped medical researchers was in recruiting patients to participate in the many clinical trials underway in 2011 and throughout 2014. Researchers were able to save a tremendous amount of resources, and more importantly, time, recruiting qualified patients to participate in the studies.  They no longer had to ask physicians they knew who were treating hypoparathyroid patients to find suitable candidates for the studies, and no longer had to accept relatively small numbers of participants as their norm.  In short, we were able to make a difference with clinical trials and medical research which helped NPS Pharmaceuticals to complete their application to the FDA for NATPARA.  We are hoping the FDA will approve the new regime sometime during 2014.

We once again participated in the Thyroid Cancer Survivors Association (ThyCa) patient conference, which took place in Pennsylvania.  Jim Sliney, Jr., Clinical Coordinator, Columbia University Medical Center, he was well received by everyone in the room, as we continue our efforts to help ThyCa members understand hypoparathyroidism, a disorder many of whom were not even aware they had because they were never told they had hypoparathyroidism!

Budgetary cutbacks continue to have an effect on ongoing and future medical research and we need in a position of being able to help fill the financial void.  Our first Silent Auction at the 7th Annual Conference on Hypoparathyroidism, raised over $2000, which will be ear marked for medical research. We added fundraising for research to our mission statement.  The plan is to encourage members of HypoPARA community to help in raising funds to help provide grant money to future research on hypoparathyroidism as well as for the Association to search for grant money.

The 7th Annual Conference was our largest event ever, where the largest group of patients diagnosed with hypoparathyroidism ever was able to meet the physicians who are working hard to improve their quality of life.  It was a time to remember.

Toward the end of 2013, one of our members became one of the few hypoparathyroid patients to undergo a successful parathyroid gland transplant.  Preliminary results and progress indicate the procedure was successful.

During 2013 we continued to use You Tube, Facebook, and other Social Media, as well as our web site, to promote out educational materials with the addition of more webinars and short educational videos.

Here’s to 2014!


HypoPARAthyroidism Association Board of Directors

 

HypoPARA Association Board of Medical Advisors

We greatly appreciate their guidance and information they provide. These distinguished specialists contribute their expertise through their willingness to help consult and educate other physicians (no matter the time of day), volunteering their time to speak at our Annual Conference on Hypoparathyroidism each year, and reviewing our medical information on our website.    Listed in alphabetical order, these wonderful specialists are:

Dr. Nancy Alston, Idaho State University, Retired               Dr. Michael Mannstadt, Harvard Medical School
Dr. Barry Bennett, Southeastern Idaho Family Practice      Dr. John Potts, Jr, Harvard Medical School
Dr. John Bilezikian, Columbia University                          Dr. Sanziana Roman, Duke University
Dr. Maria Luisa Brandi, University of Florence, Italy            Dr. Daniel Ruan, Brigham & Women’s Hospital
Dr. Bart Clarke, Mayo Clinic, Rochester                                Dr. Mishaela Rubin, Columbia University
Dr. Harald Jüppner, Harvard Medical School                       Dr. Anne Schafer, UCSF
Dr. Aliya Khan, McMaster University, Ontario                       Dr. Dolores Shoback, UCSF  
Dr. Michael A. Levine, Philadelphia Children’s                

 

Service Overview:  Education, Support, Resources, Public Awareness

Our services are intended to reach all those who have been diagnosed with any form of hypoparathyroidism, their families and caregivers, and their friends, as well as health care professionals and the public. These free services are made possible by volunteers and by financial donations.  Funding comes from membership dues, individual donations, and unrestricted operating grants.  Some of our 2012 accomplishments are:

WebsiteWe continued to improve our web site during 2013, trying to eliminate many of the programming errors of previous programmers.  We continued to make our web site better and more user friendly.  We are the only organization dealing with hypoparathyroidism that maintains a patient database.  We keep this information secure and confidential by adhering to HIPAA rules and by limiting who has access within the HypoPARA Association.   The web site should be able to take us forward in simplifying collection of information and disseminating our newsletter and other educational materials.

Clinical Trials - The HypoPARA Association has been a proponent for participation in clinical trials since our beginning in 1994. 2013 was no exception, as evident by the completion of the all-important Phase 3 clinical trials for NATPARA, which will be submitted to the FDA late in 2013 for approval.  Our patient registry will become increasingly important to medical researchers in the future as they try to understand hypoparathyroidism even more in the future and seek more effective means of treating the disorder. A true CURE is the ultimate goal.  We want to once again show our gratitude for those who are tirelessly working to find a therapy which will help those afflicted with hypoparathyroidism live a more normal life.  We are grateful to all the hypopara patients who have participated in clinical trials.  They are making a difference! 

Newsletter - The HypoPARA Post newsletter is perhaps the biggest part of our support system since it began as a four page newsletter in 1994.  We continue to have our Medical Advisors contribute to the newsletter as well has members providing anecdotal articles about how they are dealing with hypoparathyroidism. 

Conferences/Workshops - We held our 7th Annual Conference on Hypoparathyroidism at the Rockville Hilton in Rockville, Maryland on June 6th thru 8th. The conference was a success, and was the largest gathering of hypoparathyroidism patients in the world.  By giving them a chance to hear experts in the field of hypoparathyroidism and ask questions, they were empowered with more knowledge of their disorder.  The conference also allowed patients to meet and talk with others who understand what they are going through; for some this is the first time they have met anyone else with hypoparathyroidism.

One to One Phone Support - The first step for most of our members is to call us to find help in dealing with hypoparathyroidism and to learn more about this disorder.  Providing them a one-on-one support with guidance on where to find the help they need has proven to be a life saver.  This free service is available 24/7 to everyone.

HypoPARA Forum - We experienced problems with our Hypoparathyroidism Forum and had to remove it from the web site late in 2013.  Once the problems have been fixed it will be “turned on” again, and should be much better than before.

Fund Raising and Medical Research We held our first Silent Auction at the 7th Annual Conference on Hypoparathyroidism and raised over $2000.  The money will be ear marked specifically for medical research into hypoparathyroidism.  Parathyroid gland transplantation, stem cell research, better ways to treat and manage the disorder, helping physicians understand the disorder and the burden the disorder has on our lives and just some of the reasons why we need to become more involved with fund raising.  If we don’t we might just be left behind eating dust.

World Awareness Day - We along with the other associations dealing with hypoparathyroidism designated June 1st 2013, as the second Hypoparathyroidism World Awareness Day.  Our goal was to encourage our members throughout the world to work to get their state and country to recognize this day.  It is hoped that by having an awareness day, it will bring more educational opportunities our way to educate the public and healthcare providers about hypoparathyroidism.


Financial

We are mindful of our donors and investors dollars, we are conscientious stewards of these funds.  100% any monies earmarked for a particular program, goes to that program.  100% of any monies donated to our Research Fund goes to that fund.   Since all of those involved with the day-to-day operations of the HypoPARAthyroidism Association are unpaid volunteers, we are able to keep our operational costs low.

2013 Pie Chart of Finances

 

Thank You - Our special thanks to all our members, medical advisors, supporters, and donors for their wonderful support in 2013.  It takes everyone working together to see progress to bring life to our motto: “Together Growing Stronger – Together Making a Difference.”

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