2016 Annual Report.....A Year In Review 

 

 

Message from the Board

WOW what a year! We celebrated the 22nd anniversary of the Association, which was started in 1994 by James and Carol Sanders. We have gone a long way in those 22 years with the help of the members of the association we now have Natpara and we continue to help pave the way for new treatments for Hypoparathyroidism.

One of those treatments is a parathyroid gland transplant; we had another member undergo a transplant. Preliminary results and progress updates indicate the procedure was successful.

The Hypoparathyroidism Association continued our partnership with Medscape Education to produce Continuing Medical Education classes. Not only are we creating CMEs for physicians about Hypoparathyroidism and the recommended ways of treating the disorder, but we are also creating separate modules for patients and caregivers.

We held another great conference in Jacksonville, FL, over 100 patients and caregivers were welcomed to the city and the Mayor declared the week of June 1st as Hypoparathyroidism awareness week in the city.

As a board we decided to focus on smaller ½ day Hypoparathyroidism workshops throughout the country. We felt that the workshops would be more economical for our patients. Our first workshop was held in Salt Lake City, UT and was well received by those in attendance and by the physicians.

We continue to use Social Media to reach our members and other newly diagnosed patients. On our Facebook pages you can find out about upcoming Hypopara events and meet other patients. We also have our website that we keep updating with access to webinars, doctor referrals, and other needed information to help our members.

We are excited to see what the future holds for Hypopara research, workshops, and education.

 

 

HypoPARAthyroidism Association Board of Directors

 

Organization Overview

The HypoPARAthyroidism Association, Inc. is a 501(c)(3) non-profit patient organization working to improve the lives touched by hypoparathyroidism through awareness and support.  We are directed by an unpaid, all volunteer Board of Directors.  Our non-profit EIN is 82-0505424

 

2016 Board of Directors

 

       Dana Crumpton, Chairman, Wisconsin

 Deb Murphy, Board Member, California    

       Julie Hunsaker, Vice-Chair, Idaho 

 Jim Sanders, Board Member, Idaho

       Carol Sanders, Treasurer, Idaho

 Gwynneth VanLaven, Board Member, Michigan

       Lorraine Bolton, Secretary, Idaho

 

 

Medical Advisors to the HypoPARAthyroidism Association, Inc.

 

We greatly appreciate the guidance and information our medical advisors 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 conferences & workshops and reviewing our medical information on our website and newsletters.    Listed in alphabetical order, these wonderful specialists are:

 

       Dr. Barry Bennett, SEIFP & Obstetrics, ID

       Dr. Michael Mannstadt, Harvard Medical School

       Dr. John Bilezikian, Columbia University, NY

       Dr. John Potts, Jr, Harvard Medical School

       Dr. Maria Luisa Brandi, University of Florence, Italy

       Dr. Sanziana Roman, Duke University, NC

       Dr. Bart Clarke, Mayo Clinic – Rochester, MN                     

       Dr. Daniel Ruan, Norman Parathyroid Ctr,  FL

       Dr. Harald Jueppner, Harvard Medical School

       Dr. Mishaela Rubin, Columbia University, NY

       Dr. Aliya Khan, McMaster University, Ontario

       Dr. Dolores Shoback, UCSF, CA 

       Dr. Kelly Lauter, Boston, MA

       Dr. Julie Ann Sosa, Duke University, NC

       Dr. Michael A. Levine, CHOP, PA

       Dr. Tamara Vokes, University. of Chicago, IL

 

Program Overview

Our programs are available to anyone who has been touched by hypoparathyroidism. Funding comes from fundraising efforts and contributions.

WebsiteOur website continues to be our main program for providing information and resources about hypoparathyroidism to the hypoparathyroid community with a growing number of resources being made available for medical community.

Clinical Trials We continue to provide awareness of ongoing clinical trials and studies into better ways to treat hypoparathyroidism and to increase a better understanding the impact hypoparathyroidism has on patients and caregivers.

Newsletter - The HypoPARA-Post newsletter continues to provide current information relevant to the hypoparathyroid community.  We continue to have our Medical Advisors contribute to the newsletter as well has patient/caregiver articles about how they deal with hypoparathyroidism.

Conferences/WorkshopsThe 10th International Conference on Hypoparathyroidism was held in Jacksonville, Florida, June 2nd -4th with over 100 patients and caregivers from around the world in attendance.  The mayor of Jacksonville declared the week of June 1st as “Hypoparathyroidism Awareness Week” in Jacksonville. We enjoyed Hypopara Night at the Ballpark and took in a baseball game with one of our members throwing the first pitch.

In September, we held our first a Patient Workshop on Hypoparathyroidism in Salt Lake City, and received positive feedback from those in attendance. We will continue to offer the workshops in 2017.

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 lifesaver.  This free service is available 24/7 to everyone.

Social Media – We have a strong presence on Facebook with a page and two closed support groups, as well as a private forum located on our website.

Fund Raising for Medical Research We held another successful Silent Auction during the conference in Jacksonville, Florida, with all the proceeds going to Billy’s Fund for Hypoparathyroidism Research. We are still a year or two away from issuing research grants.  More focus will be placed on this area next in 2017.

World Hypoparathyroidism Awareness Day - We along with the other hypoparathyroid associations designated June 1st 2016, as the World Hypoparathyroidism Awareness Day.  Our goal was to encourage our members throughout to work to get their states in the United States to recognize this day and thus raise awareness.  Ohio became the first state in the United States to permanently declare June 1st as “Hypoparathyroidism Awareness Day” leaving just forty-nine more states to go!  Several states in the US continue to declare June 1st to Hypoparathyroidism Awareness Day on a year to year basis. 

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. In 2016, approximately 11% went to operational costs with the rest going to programs of the Association.

 

Thank You - Our special thanks to all our members, medical advisors, supporters, and donors for their wonderful support in 2016.  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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