RARE Daily

Rare Leader: Shari Hume, Co-Founder, Cure JM Foundation

September 23, 2021

The Basics
Name: Shari Slater Hume

Title: Co-founder; VP of Board; Research, Development, and Executive Committees

Organization: Cure JM Foundation

Social Media Links:


Disease focus: Juvenile myositis (JM), which includes juvenile dermatomyositis (JDM) and juvenile polymyositis (JPM), is a group of rare and life-threatening autoimmune diseases, in which the body’s immune system attacks its own cells and tissues. This attack leads to inflammation in the blood vessels and muscles causing the primary symptoms of weak muscles and skin rash, but virtually any other system can be attacked, including the digestive tract, the heart, and lungs. In addition to rash, skin manifestations of JDM can include calcium deposits and vasculitic ulcers. Other serious complications include contractures, where shortened muscles cause joints to stay in a bent position, and lipodystrophy, where fat cells are damaged and a significant amount of body fat is lost. If extensive, this can lead to other issues, such as diabetes.

There is no cure for JM, but with advances in early diagnosis and aggressive treatment, the outcomes continue to improve. The disease affects every child differently. Some children experience a mild form of the disease and may go into remission. Others follow a more severe, chronic, and potentially debilitating course. Complications can lead to the inability to walk, disfigurement, and even death. Whether the course is mild or severe, the disease is life-changing for the patients and their families. There are two to four children per 1 million diagnosed each year with the condition.

Headquarters: Encinitas, California

How did you become involved in rare disease: Like many other families who get involved in rare disease organizations, our family was directly impacted. Our son was diagnosed with juvenile dermatomyositis in 2002 at the age of 4. It took about 6 months to get a diagnosis, as the symptoms were subtle at first. He began to tire more easily and wanted to leave playgrounds five minutes after we arrived; he wanted to be carried, but we chalked that up to having an infant brother. However, when he started grabbing his knees as he tried to climb stairs, we started taking him to doctors. After multiple visits, we were unable to get a diagnosis, so by the time he could not take a step without falling down, we knew something was terribly wrong. The pediatrician agreed but was also stumped as to what was wrong with our son, so he sent us to the ER. After a muscle and skin biopsy, we learned that he had JDM, and we immediately buried ourselves in research. But what we learned most about the disease was that research and support groups were almost as rare as the disease itself. Emboldened with this knowledge and inspired by Parker’s strength in the face of adversity, we thought we could be a catalyst to the cure. We joined forces with another family to start Cure JM Foundation in 2003.

Previous career: Account Supervisor at Temerlin-McClain Advertising in Irving, Texas where my clients included American Airlines, 7-Eleven, GTE (now Verizon), and Paramount Parks.

Education: BBA in marketing/marketing management from Texas State University, MBA in marketing from Southern Methodist University

The Organization: Cure JM Foundation
Organization’s mission: To find a cure and better treatments for juvenile myositis and improve the lives of families affected by JM. Since our founding in 2003, we have invested $18 million in research, education, and support.

Organization’s strategy: We have two primary pillars: patient advocacy and research to fulfill our mission. Under the patient advocacy pillar, Cure JM provides extensive support resources and connections for more than 4,000 patients and families in 40 countries, including regional support representatives throughout the United States; has held 13 annual national conferences attracting patient families from around the world; has created more than 20 regional chapters to support families on a local basis; has funded the first-ever book solely about JM called Myositis and You with contributions from more than 100 healthcare professionals; hosts monthly educational forums where leading JM researchers speak to families and answer questions.

Our research strategy is multi-faceted but is primarily focused on projects that will make an impact on our children at the earliest possible moment, which includes funding research that will lead to better treatments or improved clinical care. Cure JM has funded more than 180 research studies and is providing financial support for three clinical trials. Several new drug candidates have been identified through the Cure JM-funded drug discovery project at the National Center for Advancing Translational Sciences (NCATS) at the NIH. Cure JM is also making progress in genetic studies through our partnership with CHOP’s Center for Applied Genomics.

Funding strategy: Cure JM Foundation’s current funding priorities are for projects with the highest likelihood of expediting the delivery of new or repurposed treatments and for projects that improve the clinical care of our patients. Cure JM has an annual Request for Proposals where select members of our Scientific Review Committee (SRC) comprised of expert researchers and clinicians review grant proposals utilizing the NIH Grant Application Scoring System. The proposal scores along with reviewer feedback are shared with the Cure JM Research Committee for evaluation. The Research Committee makes recommendations for funding to the Cure JM Board of Directors for a final decision. We modeled this after JDRF’s research review process because it’s patient-centric, while still based on solid science.

We currently fund four Cure JM Centers of Excellence across the United States that provide best-of-class care and conduct vital JM research. These are located at GWU, Duke, Seattle Children’s Hospital, and Lurie Children’s Hospital in Chicago (Stanley Manne Children’s Research Institute).

Cure JM also funds fellowships to cultivate young researchers who can carry the torch for veteran JM researchers who have already committed their lives to researching this disease. Funding fellowships is also critical because we have a significant shortage of pediatric rheumatologists in the United States with demand outstripping supply, and 14 states do not even have a pediatric rheumatologist. This obviously impacts patients’ care and outcomes, so Cure JM is trying to shift this imbalance.

What’s changing at your organization in the next year: Cure JM has a goal to double its investment in our mission, which means going from an annual revenue of $2 million to $4 million. We will be adding two to three additional Cure JM Centers of Excellence and establishing a Cure JM Clinical Care Network to help patients across the country receive the highest quality of care. Cure JM hopes to have a clinical trial in 2021 for a new drug called Vamorolone, which is a new type of corticosteroid without the side effects of typical steroids.

One of our latest areas of focus is mental health. We know from our own peer-reviewed and published research that JM patients suffer from mental health issues more than healthy children and adults. Our patients, parents, researchers, and clinicians also identified mental health as a top three research priority. Cure JM decided to take the lead in this area and brought on a mental health specialist to provide resources and support for our patients, families, and healthcare professionals. Ideally, we would like to find a way to partner with Global Genes and other like-minded organizations on this effort as research from Oregon State shows that people with a rare disease are at greater risk of depression and anxiety than people with more common diseases, even if symptoms are similar.

Management Style
Management philosophy: Create a positive and encouraging environment where both staff and volunteers know their involvement makes a direct impact. Demonstrate integrity, competence, compassion, empathy, and gratitude as a model for others to follow.

Guiding principles for running an effective organization: Recruit and empower the best volunteers by enabling them to lead projects and fundraisers while also ensuring they are successful in their efforts. Ensure volunteers are in jobs they enjoy doing! Thank them again and again! After volunteers demonstrate their effectiveness, bring them into the organization with official roles and responsibilities, such as Chapter President, Committee Member, National Leadership Council, or Member of the Board of Directors. Be patient-centric and ensure this permeates through all research and patient advocacy efforts.

Best way to keep your organization relevant: For donors, Cure JM mails handwritten thank you cards from a parent or a grandparent of a child with JM, so it is especially meaningful. I’ve had donors tell me they have never been thanked so much, and how much they appreciate it. We’ve even had donors send thank you notes and gifts to thank us for the thank you cards.

For our Cure JM families, we try to keep our relationships personal. Cure JM holds monthly educational forums on Zoom where leading JM experts address the most important issues and questions from our patients and families. Pre-Covid, Cure JM held annual national and regional conferences for patients and healthcare professionals and hopes to return to this soon. Cure JM has 20 regional chapters to better support our families on a local level.

Cure JM also has multiple types of support groups, from Families to Grandparents to Teens and Young Adults. For healthcare professionals, Cure JM has hosted numerous forums and provided online resources for more than 1,000 physicians. Our most recent forum was an international symposium on new drugs for JM. We also have a Medical Advisory Board comprised of leading JM experts to help guide our research decisions, consult with other physicians, and educate families.

Why people like working with you: I am passionate about everything I do, from founding Cure JM to my time as president of Cure JM, to my current role on the Board of Directors and sitting on multiple committees. I think one of my nicknames along the way was “Energizer Bunny,” which probably fits. I’m easy to work with as long as you show a similar level of passion and commitment.

Mentor: I would say my parents, as they have been volunteering in high-level positions for nonprofits as long as I can remember. They also encouraged me to volunteer at a young age, and have provided valuable advice and guidance throughout my time at Cure JM.

My other mentors are nonprofit leaders who don’t know they are my mentors, so perhaps a better name for them is role models.  A few examples are Pat Furlong at Parent Project Muscular Dystrophy, Nicole Boice at Global Genes and now Rare-X, David Fajgenbaum at the Castleman Disease Collaborative Network, and Michael J. Fox with his Parkinson’s Disease Foundation.

On the Job
What inspires you: I’m inspired daily by my own children who have illnesses but always show tremendous resilience and courage. I’m also inspired by all children and adults fighting JM, and honestly all patients with rare diseases, because their challenges are overwhelming, but their strength in the face of adversity is humbling to me. They drive me each and every day to reach further. I’m also inspired by our expert researchers who have taken on JM as their cause. They are as passionate and driven as our Cure JM families to accelerate the pathway to better treatments.

What makes you hopeful: That patient groups now have a seat at the table. When we started Cure JM 18 years ago, that wasn’t the case. Now, we have a stronger voice with clinicians, researchers, pharmaceutical companies, and the FDA.

Best organization decision: Hiring staff. We were an all-volunteer organization for 10 years, but finally realized in order to reach the next level, and to mitigate the risk of volunteer burnout, we needed to hire full-time employees. We started slowly with one employee who helped tremendously, and then ultimately made our best decision by hiring our Executive Director, Jim Minow, who had the experience and expertise to lead Cure JM.  

Hardest lesson learned: To let go. Once we hired staff, I moved into a more standard strategic Board of Directors role, but it was challenging to step away from the day-to-day involvement of running the organization.

Toughest organization decision: Starting it. We had three boys aged 5 and under, including an infant, and we knew this was a big undertaking. Yet, we also knew no other organization existed that solely supported JM research and patients. Someone needed to start a JM organization, and if it wasn’t going to be us, then who would it be?

It also helped that we had no idea of the magnitude of work involved in starting and running a nonprofit. In the early years, it was a constant learning experience, which was both exhilarating and exhausting. But at the end of the day, we knew we were making a difference for children fighting JM and making progress towards our mission.

Biggest missed opportunity: I think we should have added staff earlier. We were too concerned about spending money on staff and waited 10 years to do so. But the truth is, once we added staff members, they helped generate new sources of income, and we ended up doubling our annual budget.

Like best about the job: Working with people who are as passionate about Cure JM’s mission as I am and learning from and being inspired by so many brilliant people in the rare disease community. I have also been fortunate enough to pay it forward a little by offering insights and counsel to other organizations just getting started or newly emerging.

Like least about the job: That would’ve been in the beginning when my husband and I tried to do everything on our own from hand-folding brochures to holding lemonade stands.

Pet peeve: People who come up with ideas but don’t offer to help execute them

First choice for a new career: Helping other small nonprofits get started

Personal Taste
Most influential book: I tend to think the last book I read is always the best, but I recently read and loved the Pulitzer Prize winning book The Overstory by Richard Powers. It changes the way you see the world, and your place in it. It was life-changing for me.

Favorite movie: Shawshank Redemption. It shows you the value of hope, even when all of the odds are against you. I find it inspirational.

Favorite music
: Indie-folk music

Favorite food: Popcorn

Guilty pleasure: Reading, because anytime I start a good book, I cannot set it down.

Favorite way to spend free time: With my family, and also playing tennis and running




Stay Connected

Sign up for updates straight to your inbox.