By Dana Corddry
I was fortunate to speak with David Haverim, successful businessman and Board member of the Neuromuscular Disease Foundation (NDF) recently, about his involvement with the organization that’s leading the way in the rapid development of a gene therapy treatment to stop the progress of the little-known illness GNE Myopathy (GNEM), and what drives him to donate generously to NDF and other organizations.
Haverim’s lifelong interest in scientific progress towards curative treatments and patient advocacy have led him down a fascinating path of self-education that has spanned a breadth of healing modalities. His passion for scientific and curative pursuits make him an invaluable asset to NDF, the largest funder of clinical research for a cure to GNEM.
The distinguished Board member is a perpetually young spirit, whose enthusiasm for life, learning and new experiences keeps him effervescent and sounding half his age. Haverim has an instantly likable personality, full of warmth and a contagious joyful energy.
“So, I heard you’re a ‘serial philanthropist,” I tell him inquisitively.
“Whaaaattt?” He laughs, sincerely amused at the title. “I don’t know about THAT… I think It’s good to use your overflow for humanity, if that makes sense. I’ve been blessed, and I like to share – that’s the lifestyle”
Haverim’s interest in philanthropy began at a very early age, “when I was thirteen,” he says. “At a young age, it was driven by creating purpose in life. I felt that life is about achieving your utmost level of possibility, and then sharing what you have. Because it’s very clear that nobody takes anything with them. Sharing also keeps you in your most optimum state; it enlivens the best of you”.
If one wonders what drove him to support GNEM patients and programs through his generous contributions to NDF, they need only look at his younger life. When Haverim was 7 years old, his uncle married a woman who became mysteriously ill shortly
thereafter. Despite many efforts to discover the root of her enigmatic symptoms, the family had no luck.
“It was amazing, not knowing what it was,” he says. “We went through a very long period before she later moved to Israel. And there was more hope, that maybe in Israel the doctors would discover what it was. But no, she couldn’t find out for many more years”. Ultimately, his family learned that she had suffered from GNE Myopathy (then called “HIBM”). He still recalls the spiritual distress he experienced as a child, observing her struggle.
“I had questioned God’s operation, wondering why this woman would be a victim of this disease, when we don’t even know what it is. I used to have these conversations with my old God, thinking “What is going on here?!”
Years later, an adult Haverim, still centered in his values of achieving and giving back, became involved with various organizations working to bring awareness to GNEM and fund research toward finding a cure.
“After NDF started, I was invited by a patient to an event they hosted. And I was very excited to see a new operation at work! I believe NDF has taken over in this area for the better, done an AMAZING job,” he says assuredly. “I can really give my thanks to Lale Welsh (current NDF Executive Director), who did a tremendous amount of work taking the organization to the amazing level that it is at now, internationally. All of the doctors who are involved, all of the researchers who are involved, all the fun she has brought into the organization, for research, and for everything. I’m honestly very proud of her achievement up to this point”.
When asked about the ambitious 2-year plan that NDF rolled out in October, committing to reaching the human dosing phase of a new gene therapy treatment for the rare disease, Haverim is all candor.
“It is ambitious. […] This goal is a big challenge,” he says, before highlighting the significant changes that NDF has created in the global GNEM community since its inception. The lag time that GNEM patients often discuss having experienced in their long journeys to get correctly diagnosed, like Haverim’s Aunt experienced, has evolved into a rapid and much less difficult process. He credits this improvement to NDF’s tireless community education and patient advocacy work.
“Now it’s much better, thanks to NDF,” he says. But five, seven, ten years ago. . […] I give my thanks to Lale again, for the setup she created. It’s amazing how fast the reach of NDF has expanded internationally. I think we have a presence in 32 countries, and we’re moving toward 42 countries right now. In that way, NDF is leading the way in making GNEM more searchable and visible, online and in the global community”.
When asked what wisdom he might wish to impart on future would-be Philanthropists, he keeps it simple: “Follow your heart”.
Haverim is a pleasure to speak with, and his enthusiasm and altruism are immediately evident. He says that the one piece of advice he would share with members of the GNEM community is: “Never look at yourself as a victim. God is always there. And, if it needs to be, change your glasses”.
His optimistic perspective and interest in human consciousness has also led him to explore alternative modalities, and to start his own non-profit organization, called World Unity Organization, which supports yoga, meditation, sound bath, ecstatic dance events and also supports spiritual organization who are non denominational. He has also done extensive personal research into the practice and philosophy of neuroscientist Dr. Joe Dispenza, and he emphatically encourages the younger generation of GNEM patients to explore every avenue to getting well. “I am very heartful about that one,” he says about the practice, hoping that young patients will get involved with Dispenza’s programs and teachings.
GNEM, or GNE Myopathy, is a genetic disease that exists in races and nationalities
worldwide, with elevated carrier rates in certain populations of the Middle East, Eastern Europe and Asia.
NDF is a global leader in critical research focused on treatments for GNEM.
The International Gene Therapy Development Program (IGTDP)
In October, 2021, NDF announced an auspicious collaboration of the world’s leading gene therapy experts on a large-scale initiative to obtain IND approval to treat muscular degenerative disease GNEM.
Fundraising Initiatives to End GNEM
An anonymous donor has pledged a $125K matching grant to fund critical research to develop the gene therapy that will end the progression of GNEM. NDF gladly took on the challenge and, after a successful fundraising campaign, raised twice the amount! If you would like to contribute to research that will end GNEM and improve the lives of GNEM patients around the globe today, please visit the NDF donation page.
David Haverim Training Grant for GNEM Patients
David Haverim is so confident in the power of Dr. Joe Dispenza’s training programs backed by neuroscience and research, he has offered to fund a trial for 10 NDF patients to take Dispenza’s week-long transformational intensive, at no cost. Patients who are interested can reach out to firstname.lastname@example.org. Haverim says “I believe for those among the younger generation who get diagnosed with HIBM/GNEM. . . it would be the most amazing and effective way of impacting the progress of the disease. From the bottom of my heart, I wish I could get all of the young GNEM patients into Joe Dispenza. Get them into that field, and tell them – the best thing you can do is to be calm, to concentrate, and trust me – It’s going to work. It’s just amazing”. We will require the interested patient to start reading Joe Dispenza’s book and some of his interviews on youtube.