In the United States the NIH (National Institute of Health) defines a rare or orphan disease as one which has fewer than 200,000 people. There is an estimated 6000 to 7000 rare diseases.  I recently read a report about the success of the 1983 Rare Disease Act.   It has been instrumental in bringing new drugs[...]

By Bonnie Falbo As the wife of a myeloma patient, and as a new Myeloma Coach for the Myeloma Crowd, I was honored to attend the Inaugural Charlotte Plasma Cell Disorder Congress, hosted by Levine Cancer Institute on August 9-11, 2019. Intended primarily for local health care providers who treat myeloma patients, Myeloma Coaches and[...]

By Maddie Hunter – What skills or beliefs do I have to bring to this current challenge I am experiencing? – What are my best options to consider?  – How do I know the best decision to make?   As a long-time leadership coach in many types of corporate and non-profit organizations, I discovered that these[...]

As a caregiver, supporter, friend or family member, it can be hard to know exactly how to help your myeloma patient. Your loved one has the disease, but sometimes it can feel as if you are carrying the weight of it just as much. It can even be confusing figuring out how MUCH to help.[...]

If you are starting a new treatment or using supplements, you should discuss it with your doctor. Neuropathy is weakness, numbness, and pain from nerve damage (typically in the hands and feet). The myeloma protein produced by malignant plasma cells can cause direct damage to nerve cells, resulting in symptoms of neuropathy. We asked myeloma[...]

It’s tricky having multiple myeloma. As I’ve been talking with other patients, we’ve not only shared the physical challenges it poses, but also the mental ones. Myeloma is a mind game. We have much to be grateful for in myeloma therapy because unlike 20 years ago, we now have a wide range of treatment options[...]

By Cindy Chmielewski @MyelomaTeacher I arrived for the first time at the Chicago ASCO annual meeting with the theme Caring for Every Patient, Learning from Every Patient. I received a Conquer Cancer scholarship to attend this conference. My ASCO experience started by attending an education session entitled Many Shades of Disparities in Myeloma Care. The[...]

  Join us at the Deer Valley Resort on July 19 for a spectacular summer evening with the stars including two global myeloma experts, a gourmet dinner and an evening of comedy with nationally recognized comedian Alex Velluto.  This event is held in conjunction with our Myeloma Coach Deer Valley Summit.  Lodges at Deer Valley[...]

  Congratulations to Richard Hite, who successfully completed his 600 mile ride from San Francisco to San Diego in just 6 days! Richard rode to raise funds and awareness of multiple myeloma. Thank you Richard, your family and your amazing support team who kept you going on this truly incredible journey. This was a stunning[...]

  The world for multiple myeloma patients is one of ups and downs. How can we ride successfully through all its hills and valleys? Myeloma patient Richard Hite shares how he is riding well with myeloma as he rides the first Bike the Coast 600 mile ride from San Francisco to San Diego. First, Richard[...]