RARE Daily

Rare Leader: Rachel Alvarez, Exeutive director, Cure CMD

April 30, 2020

The Basics
Name: Rachel Alvarez

Title: Executive director, secretary, board member

Organization: Cure CMD

Social Media Links:

Disease focus: Congenital muscular dystrophies (CMD) represent a group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A person with CMD may have various neurological or physical impairments. Some never gain the ability to walk, while others lose the ability as they grow older.

Headquarters: Lakewood, California

How did you become involved in rare disease: I have CMD and in 2007, I had a chance encounter with a physician and parent of CMD affected individual in the emergency room during a critical medical situation. She provided more information about my diagnosis than any other physician ever had, and arranged to get me genetically confirmed 10 months later, at the age of 38 (I have been affected since birth). I then volunteered for Cure CMD in communications and web development from the organization’s inception in 2008, and was hired as Cure CMD’s first paid employee in 2012 to manage our patient registry. When the co-founder stepped down in 2016, I stepped into this leadership position and joined the board of directors.

Previous career: Finance, accounting, and operations in the medical and nonprofit service sectors

Education: B.S. business administration with a specialty in technology and operations management from California Polytechnic University.

The Organization
Organization’s mandate: Cure CMD’s mission is to advance research for treatments and a cure for the Congenital Muscular Dystrophies. We will improve the lives of those living with CMD through engagement and support of our community.

Organization’s strategy: The patient voice is critical to every aspect of our work. We fund basic to translational to clinical research, administer a patient registry for CMD and the wider congenital muscle disease global population, host biannual scientific and family conferences, and have an incredible library of educational resources, including care guides, a mobile app, and more than 100 videos on our YouTube channel. We also spend a lot of time cultivating our support network, largely through more than a dozen private Facebook groups.

Funding strategy: While the bulk of our donors and fundraisers are community members, we spend a great deal of time and effort producing high quality grant applications, which has netted the organization more than $850,000 in corporate and foundation donations over the last four years. Our ultimate goal is to shift our fundraising activities to grow our corporate and foundation revenue in order to reduce our community’s fundraising burden. And, as we get closer to clinical trials, fulfilling our mission will get exponentially more expensive, so we need corporate and foundation partners to help pave the way.

What’s changing at your organization in the next year: Cure CMD was one of the fortunate recipients of the Chan Zuckerberg Initiative’s Rare As One grant, which allows us to focus on expanding our programming, funding grants, building a new registry, and moving the needle toward clinical trials. We are incredibly grateful for this opportunity, and the timing of it in the midst of the COVID-19 pandemic. We are determined to make it count.

Management Style
Management philosophy: I’m trying to be less of a micromanager, which is my nature. I’ve taken to giving staff members a project and throwing them into the deep end. I like to think I’m a good judge of character, so letting go of the reins a little bit to the people we’ve selected to help execute our mission feels right. I’ve seldom been disappointed. Also, as an affected individual who could potentially need to shift my focus to symptom management any moment, it’s in the organization’s best interest that there are more helping hands—more people who are invested in our mission to ensure Cure CMD’s longevity beyond my existence. And while I continue to be the “octopus” as our scientific director calls me, I am always cognizant of my mortality, and how critical it is that this organization and our mission continues regardless of my status.

Guiding principles for running an effective organization: Transparency, honesty; and ensuring that the patient voice resonates in every decision, every dollar spent, and every minute dedicated to the organization. Being available to community members, however they need us to be. Knowing there is no task beneath me when it comes to executing our mission. If I was physically capable of mopping floors, I would do it. There is nothing exotic about being a nonprofit executive director. As an affected individual, I lead by example—showing families of young affected children that their lives can be as full as they want despite having this disease.

Best way to keep your organization relevant: Maintaining a dialogue with affected individuals and families in our community—making sure they continue to be the focal point of our work. We do what we do for them. If what we’re doing isn’t their priority, then we are wasting valuable time.

Why people like working with you: Maybe it’s that they see I am willing to work as hard or harder than anyone else, and that I am always available to support or provide input. I think our community trusts that Cure CMD has their best interest at heart, and understands what it is to live with this disease. I can be curt, and piss people off, but even then, they usually understand my motivations.

Mentor: Anne Rutkowski, co-founder, ER physician, and mother to a lovely young woman with CMD and cognitive impairment. Anne is superwoman to me. Without her, Cure CMD would not be where we are today, and we would not have such a rich foundation on which to continue our efforts.

On the Job
What inspires you: The affected individuals and families in the CMD community, for whom everything we do matters. The researchers and clinicians who have dedicated their careers (and often their every waking moment) to identifying treatments and improving care. Advocates from across the rare disease community fighting to ensure equal access, funding, and a voice in the progress toward treatments.

What makes you hopeful: The speed at which science is now progressing, and the fact that there are now several neuromuscular conditions in clinical trials. Our time is coming.

Best organization decision: Starting a patient registry in 2009.

Hardest lesson learned: That the standard of care is not standard, even in the United States. Pediatric care is fairly under control, but adult care is always a crap shoot when it comes to getting the care and surveillance you need as an affected individual. While I understand it’s impractical to expect every physician to know what to do with a CMD patient given its ultra-rare prevalence, there are resources, publications, and experts willing to provide guidance and advice. The practice of medicine is a life-long endeavor, and we need more physicians who are willing to say, “I don’t know how to treat you, but let’s figure this out together.” They need to be willing to seek out those resources and listen to their patients so that our community can not only survive but thrive while we wait for science to identify treatments.

Toughest organization decision: Pausing our research grant program for three years while we refocused our strategy and built up capital. Also, growing our paid staff budget, which meant reducing the amount of money we could spend on research. In the end, it was a good decision – all volunteer organizations are not sustainable, but it was a difficult shift in mindset both internally and for our community.

Biggest missed opportunity: Spending more effort on grant writing earlier in our existence. Our grant writer has opened up so many opportunities in the last four years that I wonder if we would have been further along had we focused more on this aspect of fund development.

Like best about the job: This is my dream job. I get to advocate and communicate on behalf of my community, and apply the skills learned in school and in my previous career to advance our mission. There is nowhere else I’d rather be.

Like least about the job: Asking for money.

Pet peeve: Lack of attention to detail. Inspiration porn (the portrayal of people with disabilities as inspirational solely or in part on the basis of their disability). Being called a “patient” when I’m not at the doctor.

First choice for a new career: If Cure CMD’s mission is accomplished and there’s no more need for our work because everyone with CMD has a treatment or a cure, then I suppose helping other rare disease organizations realize their mission would be where I would head.

Personal Taste
Most influential book: The I, Robot series by Isaac Asimov. There are a lot of good lessons about human behavior.

Favorite movie: Silence of the Lambs. I’m also a huge sci-fi and Marvel movie fan.

Favorite music
: Angry women. Is that a genre? Pink, Avril Lavigne, Christina Aguilera, Tracy Bonham, Alanis Morrisette, Aretha Franklin, Pat Benatar, Heart. Not that I don’t listen to lots of male-created music (I love some Sting, Beck and Queen), but when I need inspiration and motivation, or to alleviate some emotional stress, empowered women are my go-to. I also really love acapella bands (Pentatonix, Home Free) because I am a choir nerd.

Favorite food: Butter. I call grains and vegetables my “butter delivery system.”

Guilty pleasure: I’m an avid video and board gamer. My husband of 18 years and I own about 350 board games and we met in an online MMORPG [massively multiplayer online role-playing game]. Our closest and longest friends are those that we game with.

Favorite way to spend free time: See guilty pleasures. I also consume a fair number of audio and Kindle books, and rarely go a day without music. And, we have two cats who are really the center of our home life.

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