The Hyper IgM Foundation Blog 

President and co-founder featured in the Global Genes Rare Daily

Sep 14, 2019

President and co-founder of the Hyper IgM FoundationAkiva Zablocki, was recently profiled in the Global Genes Rare Daily for their Rare Leader series. Check out the article below to learn more about the work Akiva, and the Foundation, are doing on behalf of this rare disease community. Here are some highlights:

How did you become involved in rare disease: My background in rare disease started 14 years ago when I was diagnosed with an “inoperable” brain tumor in my brainstem, a rare location for a pediatric tumor, at age 25. I had to advocate for myself, as most doctors did not think I would live more than 2 years. After getting opinions from over 30 specialists, I chose to fly to Phoenix, Arizona to have brainstem surgery that most of my New York doctors thought would kill me. I survived the surgery and, although the recovery was difficult and I still have several deficits, the entire tumor was resected.  The following year, I got involved with the Children’s Brain Tumor Foundation, eventually joining their board of directors.

About eight years later, in 2013, my first son was diagnosed with a very rare, one-in-a-million immune deficiency called X-Linked Hyper IgM Syndrome, and my world was turned upside again. My wife and I learned all we could about this rare disease, and, with little information out there, proceeded to get opinions from more than 30 doctors on the best treatment. Our son had to undergo two stem cell transplants and multiple hospitalizations as we chased a normal life for him. Along the way, we connected to others with this rare disease, started an online support group for the families, and eventually founded the Hyper IgM Foundation in hopes to improve the treatment, quality of life and the long-term outlook for children and adults living with Hyper IgM Syndrome through research, support, education, and advocacy.  Our son is now considered cured, and we’re determined to make that a reality for all patients with this disease.

Previous career: My career has always been dedicated to healthcare. After receiving my master’s in public health from the Mailman School of Public Health at Columbia, I worked in healthcare consulting for a multinational consulting firm. In that role, I advised Fortune 500 companies on their health and wellness plan offerings and helped devise new initiatives to improve the welfare workforce for my clients.

Education: B.A. in Economics and Philosophy from Columbia University;

M.P.H. in Healthcare Management and Policy from the Mailman School of Public Health at Columbia University

The Organization
Organization’s mandate: Our mission is to improve the treatment, quality of life and the long-term outlook for children and adults living with Hyper IgM Syndrome through research, support, education, and advocacy.

Organization’s strategy: Our primary objectives are to find a cure for Hyper IgM Syndrome, to develop and enhance the current understanding of Hyper IgM, and to provide education and support to our families. We focus much of our resources on connecting with researchers and working with doctors to better understand our disease and drive research into finding a cure. Importantly, we have cultivated an international network of experts that can connect with our patients (even in the remotest of areas) and a rich online support group for our families.

Funding strategy: We are still relatively small but growing every year. Since we are entirely volunteer-based, we look to our community and families to run fundraising campaigns for most of our funding. We utilize our own networks and social media to reach a wide spectrum of donors as well as work to cultivate existing donors.

What’s changing at your organization in the next year: A primary goal over the next 12 months is to expand our board of directors. We hope to grow the board by 40 percent in 2020, something we believe will lead to increased sources of funding that can be used to make research grants and otherwise support the programs and objectives of our organization.

Management Style
Management philosophy: I like to give our volunteers a lot of independence and control over their projects and make sure they feel appreciated.  If it is social media awareness, patients and family support or a fundraiser, I like to allow volunteers with good ideas to take ownership and run with it, while supporting them with resources and knowledge as needed.

Guiding principles for running an effective organization: I like to make sure everyone involved feels as connected to the organization as its founders do. Give ownership and leadership to the volunteers that want it and continuously work on getting more involved.

Best way to keep your organization relevant: From a social medial and technology perspective I try to stay ahead of the game, whether it is fundraising or accepting new forms of donations. Also, make sure we are continuing to serve our community and our patients while seeking out collaborations with larger organizations.

Why people like working with you: I think I am responsive and open for partnerships on many levels, and I am always happy to give advice and share what we have learned along the way, helping new rare disease groups get started.

Read the full interview:

Rare Leader: Akiva Zablocki, President, The Hyper IgM Foundation