The Hypoparathyroidism Association, Inc. (HPTH Association) 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.
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
James Sanders, Chair, Idaho Carol Sander, Treasurer, Idaho Ben Sanders, North Dakota
Julie Hunsaker, Assistant Chair, Idaho Terri Dempsey, Florida
Lorraine Bolton, Secretary, Idaho Roger Evans, Colorado
We are “AMAZED” at the progress we made during 2011. Not only was the REPLACE study, being conducted by NPS Pharmaceuticals, completed, they are in the process of evaluating the results and preparing their application to the FDA for approval sometime in 2013. Once the FDA approves PTH (1-84) as a treatment for hypoparathyroidism we will join the rest of the endocrine diseases and have a hormone replacement treatment available for us. We have waited a long time for this moment, which will certainly be a cause for celebration by hypoparathyroidism patients.
Our Fifth International Patient Conference was a huge success, bringing patients and their families from all over the United States and Canada together along with all of our speakers. We think it is fair to say the physicians continued to learn more from the patients and their families about this disease and how it affects their lives.
During 2011 we discussed instituting Webinars to give our medical advisers an opportunity of presenting talks on various subjects through our web site. We are in a position to begin this important program early in 2012.
We have continued our efforts to let others know about hypoparathyroidism and our Association. This year Dr. Anne Schafer, one of our medical advisers, presented a talk at the annual conference for the Thyroid Cancer Survivors Association, ThyCA, in Los Angeles. We were dismayed when we discovered many of the patients there who have had thyroid surgery were not even aware they had hypoparathyroidism themselves. This indicates to us that we are in need of a more visible presence in the medical community to educate them about this disease. Our goal for 2012 is to increase our educational outreach in the medical community as quickly as we can.
Our quarterly newsletter has continued to improve, with a new format, color photographs, and improved content. Our members have commented how much they appreciate the updates. We continue to strive to provide reliable information in a sea of disinformation and outdated material. We are, through our web site and newsletter, helping to educate those in the hypoPARA and medical communities.
Our web site took a lot of our attention as we had to once again rescue it from our web site developer. We came to realize just how difficult it is to find web designers that understand what non-profit web site is and needs. We appreciate your continued support and understanding while we untangle some of the mess created by the previous developer. We feel, the site is now back on track and we have hopes of doing even better things with it in the coming months and years. Our goal for early 2012 is to move the website to its own server and obtain a secure connection (https).
About one dozen Face Book Groups have been formed specifically dealing with hypoparathyroidism issues. Some of them are very active, with over 200 members discussing a wide variety of situations and issues. We have been involved in them, making sure they are aware of our presence and providing our input whenever possible.
Due to the sensitive nature of these discussions, we have been encouraging the use of the HypoPARA Forum on our web site. It has come to our attention that Face Book, at its best, is not really a secure social media and as such not a good venue for such discussions to take place. The HypoPARA Forum is more secure and will also be on a https connection in early 2012.
There are two areas where we have been able to provide help in ways that reaches individual patients. This year the parent of a young boy with multiple medical problems met Dr. Karen Winer, NIH, during our conference. They were able to get their son referred to Dr. Winer, and to arrange their first appointment at NIH within a few weeks of the conference. Other patients have been able to find immediate help and information from our medical advisers, where they were often ignored or left frustrated by their own physicians.
Our medical advisers continue to show their willingness to work with individual physicians to help them treat their patients, no matter where they live. By helping to educate other physicians one at a time we are also helping patients receive reliable help which was unavailable. However, given our recent revelation by those at the ThyCa conference we need to step up our education of the medical community by casting a wider net. So in 2012 we are going to change some of our educational outreach programs.
While 2011 was an amazing year for the Hypoparathyroidism Association, we hope to continue to move forward so that each year we will continue to make a greater difference than the previous.
HPTH Association Board of Directors
The HPTH Association’s Medical Advisory Board was expanded in 2010, to 15 hypoparathyroidism specialists with the addition of Dr. Anne Schafer. 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 International Patient Conference each year, and reviewing our medical information on our website. Listed in alphabetical order, these wonderful specialists are:
Dr. Nancy Alston, Idaho State University Dr. Aliya Khan, Oakville Bone Center, Ontario
Dr. Barry Bennett, Southeastern Idaho Family Practice Dr. Michael A. Levine, Philadelphia Children’s
Dr. John Bilezikian, Columbia University Dr. Michael Mannstadt, Harvard Medical School
Dr. Maria Luisa Brandi, University of Florence, Italy Dr. John Potts, Jr, Harvard Medical School
Dr. Bart Clarke, Mayo Clinic, Rochester Dr. Daniel Ruan, Brigham & Women’s Hospital
Dr. Pierre D’Amour, University of Montreal, Quebec Dr. Mishaela Rubin, Columbia University
Dr. Harald Jüppner, Harvard Medical School Dr. Anne Schafer, VA Hospital, San Francisco
Dr. Dolores Shoback, VA Hospital, San Francisco
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 2011 accomplishments are:
Web Site - This year 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 strive to 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 HPTH Association has long been proponent of participation in research. Last year was no exception; with our help we were instrumental in procuring participants for several clinical trials taking place at this time. Using the above mentioned database, we were able to find those patients that fit clinical trial criteria and contact them to inform about the clinical trial(s) and encourage them to discuss with their physician the possibility of participating. We want to publicly thank those who are tirelessly working to find a therapy that will help those afflicted with hypoparathyroidism live a more normal life.
Newsletter – The HypoPARA Post newsletter is perhaps the biggest part of our support system since it was just a two page newsletter back 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 5th International Patient Conference at the Rockville Hilton in Rockville, Maryland on June 2th thru 4th. According to the attendees the conference was a success. 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 for where to find help in dealing with hypoparathyroidism and to learn more about this disorder. By providing them a one-on-one support with guidance on where to find the help they need, it has proven to be a life saver. This free service is available 24/7 to everyone.
HypoPARA Forum Our HypoPARA forum, located on our web site, is a place that is private where our members can go to talk or ask questions about hypoparathyroidism. It is monitored and when necessary, questions of a general nature, are passed on to one of our Medical Advisors to answer. No diagnosing or evaluating is done on the forum. Our forum and our site are not meant to act as a doctor but merely as educational tools to be used in conjunction with a qualified healthcare provider.
World Awareness Day - We along with the other associations dealing with hypoparathyroidism designated June 1st 2011, as the first 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.
Our special thanks to all our members, medical advisors, and donors for your wonderful support in 2011. You are all instrumental in making our motto come to life “Together we are growing stronger – Together we are making a difference.”
For the Years Ending December 31, 2010 and 2011