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Mar. 6, 2020

TOPIC: Advocacy, Featured News, Head of the Herd, Patient Stories, Patients & Members

Head of the Herd: Akiva Zablocki, The Hyper IgM Foundation

Posted by Laura Mullen

At the head of the herd is… Akiva Zablocki, President, The Hyper IgM Foundation

Akiva most frequently checks his…  https://www.facebook.com/Akiva 

Akiva advocates for those living with… hyper IgM syndrome

Akiva is located in… New York, NY

How Akiva got here…

In 2013, my son was diagnosed with a very rare, one-in-a-million immune deficiency called X-linked hyper IgM syndrome, and our world was turned upside down. 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 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.

What’s working now…

Over the last five years, we have created a connected global community of hundreds of hyper IgM patients and families. Last year we came up with our motto, “One in a million, but not alone,” to signify the impact the Foundation has had on our ultra-rare disease. When our son was diagnosed there was little information online about his disease and what was there was mostly outdated and inaccurate. We have created a comprehensive website with information to help empower patients to understand their disease and make better health decisions. We have co-authored the NORD page for hyper IgM, bringing updated and accurate information to millions of readers. We have connected and built relationships with the various immunology societies and collaboratives to better serve our patients and stay updated on new developments in our disease space. Lastly, we have allocated over $80,000 in research grants, aimed at better understanding hyper IgM and developing a cure for our disease.

What’s happening in 2020…

We are working on a few research initiatives, including a carrier study to better understand the health outcomes of carriers of the X-linked type of hyper IgM syndrome. Last year we funded a researcher working on a quality of life survey of our patients and this year we will help her implement the study and reach our patient population. We received a grant from a pharmaceutical company to implement an educational webinar series for our families, and we will be rolling this out in the next couple of months. From an organizational perspective, a primary goal over the next 12 months is to expand our board of directors. We hope to grow the board by 40% in 2020, something we believe will lead to increased sources of funding that can be used to increase research grants and otherwise support the programs and objectives of our organization.

The next five years…

I hope that in the next five years a gene-editing treatment for our patients will become a reality. If so, I see our foundation working closely with the researchers and clinical trials that will be conducted with the gene-editing treatments and hope we can get pharmaceutical backing for this treatment. From an organizational standpoint, I hope that in the next five years our funding cycle expands so that we can move towards a small paid staff that can bring more focus to fulfilling our mission.

Tips for running your organization…

I like to make sure our community and families feel connected and that they have ownership over our mission. I give our volunteers a lot of independence and control over their projects and make sure they feel appreciated. Whether 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. Furthermore, I think keeping an open mind to collaborate with other nonprofits of all sizes is key. I aim to be 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.

Akiva’s lessons for other leaders…

Switching to a paid donor management system has been key. I had spent the first three years using an Excel file and individually writing “thank you” letters, which was taking up much of my time. The donor system is not perfect, but it at least allows us to target donors with relevant communications and track donors over time.

As mentioned, find ways to collaborate and work with other nonprofits in your disease-specific space. We are always open to working with the larger immune deficiency organizations on initiatives as well as other small rare disease groups. These combinations have been fruitful and have benefitted our community without sacrificing our individual mission and focus.  

Akiva’s outlook…

My son is seven years old now, and even though he has had a bone marrow transplant and has a working immune system, we do not have the data yet that these patients do better long term than the ones that are not transplanted. But I see him every day going to school and playing with his friends outside and I know that his life is better off now than it was before he had his own immune system.

In the end I am an optimist, because there is no other way to approach the rare disease world we are in besides optimism. I believe that we will one day find a cure for hyper IgM syndrome and our whole community will be better off.

Akiva’s most recently used NORD service…

NORD has been so supportive over the years, from the webinar series that helps with board governance or fundraising to the access to BoardSource. In addition, attending the NORD Summit each year has expanded my network, allowing me to learn from other nonprofit leaders, as well as meeting key stakeholders in the rare disease world. Lastly, the NORD Member Leaders Facebook group has been an invaluable resource for crowdsourcing ideas for day-to-day questions and issues that come up.

If Akiva found a cure and had to find another job, he would… apply all that I learned in our disease to help other diseases and communities.

Akiva wants you to read… Sapiens: A Brief History of Humankind by Yuval Noah Harari

Akiva would rather be… starting disease-specific support groups on Facebook.