Message From Our CEO

What’s New and Noteworthy in Bone Health

New Medicine and The Power of Research:  In the osteoporosis community, we have reason to be positive!  A new drug, brought to us by Amgen, Evenity, or as it will be called in the community Romosozumab, Romo for short, was approved by the FDA on April 10, 2019. The major benefits of this new medicine:  

  1. EVENITY is the first and only bone builder with a dual effect that both increases bone formation and decreases bone loss.

  2. EVENITY rapidly reduces fracture risk and builds new bone with twelve months of therapy.  

NOF featured the press release talking about the launch of Romo on our website and social media channels.  This link provides much more information about the medicine, including the risks and benefits.

Many of you reading this message know that it takes years for medicines to be developed, to go through clinical trials, gain approval from the FDA, and then get to the patients who will most benefit.  Likely you know that medicines don’t normally start their development in the labs of companies---they are originally developed because of the understanding of basic science, translational science, and patient needs at America’s best academic medical centers.  NOF is proud of Dr. Bob Recker, and his wife, Susan, both at Creighton University, and their role in the discovery of Romo. I would encourage you to read Susan’s full blog post to learn more about this marvelous story. This excerpt provides some highlights:


In the mid 90’s, Bob was asked to evaluate a patient who seemed to have unusually dense bones. She was a 16-year-old patient recovering from injuries suffered in a car accident. None of those injuries involved any broken bones. The young lady’s mother and aunt were tested and they, too, had bone density significantly above average. Bob applied for a grant from the National Institutes of Health but didn’t get it. Since our kids were grown, he asked me to volunteer as project manager for the High Bone Mass Study. Over a two-year period, I found over a hundred members of this family and got DXA bone density testing and blood for DNA evaluation for each of them. I was not the only volunteer—physicians and researchers all over the country helped with the DXAs and sending blood to the Osteoporosis Research Center for DNA testing.

Finding the gene responsible was a Herculean task. The human genome had not yet been mapped and finding the gene was like looking for a small crack along a stretch of interstate highway without a map. In 1996, we found the mutation to be on chromosome 11, and a new drug called Romosozumab was developed that would rapidly increase bone density for those diagnosed with osteoporosis. It took from 1996 to 2019 for that medicine to move through clinical trials to FDA approval.  

Update shared from Dr. Robert and Susan Recker

Recently, we have learned that the major stimulus to create Romozosumab was the earlier published studies showing that a disease called “Sclerosteosis”( “Van Buchem’s Disease”) that was due to a mutation on chromosome 17 and which blocked the production and function of sclerostin, resulting in very high bone mass and severe disease. We do not know how much our discovery of the High Bone Mass (HBM) mutation on chromosome 11 influenced their decision to pursue development of Romozosumab. However, they likely knew about it and were likely influenced some by it. The family with the HBM gene has normally shaped bones and to our knowledge does not experience disease as a result of their high bone mass.

In any event, the HBM mutation we discovered was not the dominant influence in the decision by Amgen and UCB.


Dr. Robert and Susan Recker


May is National Osteoporosis Month:  At the start of this letter, I talked about the hope that spring inspires within me.  Ray Bradbury said, “Action is hope. There is no hope without action.” While we count on each of you, our major supporters, to be vocal, dynamic Ambassadors of our cause at each opportunity, May is our time to highlight the needs of our community and to take our efforts up a notch.  Education. Awareness. Engagement. Involvement. Amplification of our Efforts.

I’m thankful every day for the work that has been done, but until everyone understands the enormous impact osteoporosis has on our aging community and the overwhelming cost it has on our healthcare system, our work is not done. Why do we need to amplify our message?

  • One in two women and one in four men in the United States over the age of 50 will fracture a bone due to osteoporosis.

  • Two million people per year will fracture a bone, yet, only 16% of them will be tested and treated for osteoporosis.  Compare this to 96% of cardiology patients being treated after a heart issue.

  • 50% of repeat fractures could be avoided with well-tolerated and cost-effective treatments.  Imagine the suffering that could be eliminated, if not eased, and the incredible savings this could mean to our healthcare system.

This is NOF’s 35th Anniversary.  We’re asking each of you to “turn on” 35 friends, colleagues, family members to our cause.  Tell your personal story. Write about it for our blog (like Susan Recker). Use our infographics in your email signature.  Retweet one of our social media posts. Engage with us on Facebook and send that message to 35 friends. Start an online fundraiser and ask friends to donate $35 for your birthday or holiday gift.  Then, write and tell me about your response! Included in this packet are examples of the materials we’re using…we encourage you to put them to use in your own unique way. Also check out for our new digital interactive tool with fantastic resources to share!

To create the impact our patient community needs, we must unite.  This May, National Osteoporosis Month, join us in creating action that inspires hope.  Stay Bone Strong!

Yours in purpose and progress,


Elizabeth Thompson
Chief Executive Officer and Chief Advocate