When science, social media, and the Internet’s global reach come together, the result is empowering. The team at Tisch Multiple Sclerosis Research Center of New York (Tisch MSRCNY) may have discovered a game-changing approach to funding research. It has launched a campaign on the popular crowdfunding site Indiegogo.com with the goal of raising $300,000.
The money will support their stem cell study involving 20 patients with multiple sclerosis (MS). Indiegogo acts as a crowdfunding conduit between great ideas and people who want to fund them—something the team at Tisch MSRCNY is banking on.
The campaign, launched on March 14, 2014, has already raised more than $231,000. Clearing the fundraising hurdle will let researchers focus on the next step: proving that analogous stem cells can repair nerve damage caused by MS, something patients have been waiting years to hear.
The National Institutes of Health (NIH) and organizations such as the National MS Society have traditionally been the sources for funding research into cutting-edge MS treatments, such as stem cell therapy. Grants are divided among various promising new therapies, however.
The crowdfunding approach is as new and promising as the research these organizations are financing. Crowdfunding empowers those passionate about stem cell therapy to put their money directly into the hands of the researchers.
Cutting out the “middlemen,” philanthropists can decide how their donations are spent. Giving directly to the researchers fast-tracks a study that might have otherwise failed without grants.
Depending on the level of donation, those who contribute receive “perks” ranging from a personal thank you card to a research-facility tour given by the study’s lead investigator.
According to the campaign, for a contribution of $25,000 or more, “Dr. Saud A. Sadiq, a world-renowned research scientist and physician who has devoted most of his medical career to treating patients with MS and finding the cause of and cure for the disease, will give you a tour of the lab along with Dr. Violaine Harris, Senior Research Scientist. Lunch will be provided.”
So far, nobody has claimed this crown jewel, but many have given $25 or $100, and others have given well into the thousands of dollars. The comments reveal donations are often given in honor of someone who didn’t live to see stem cell therapy become a reality.
The Cost of Failure
Relying on traditional methods of funding, past stem cell studies have run into trouble when the money dried up. One such study was Halt-MS, which strggled to recruit new volunteers after the NIH suffered budget cuts.
Dave Bexfield, the founder of ActiveMSers.com, was a patient in that study.
“The NIH was no longer funding the bulk of the clinical trial,” Bexfield explained in an interview with Healthline. “Only MRIs and blood work for research purposes. To afford the $200,000 transplant, I was forced to borrow heavily from my parents and personal savings earmarked for retirement.”
Studies often fail simply because the money runs out. For people suffering from a chronic, progressive, and often debilitating disease like MS, waiting for the government or other groups to support progress toward a cure is not an option.
Bexfield, who was nearly too disabled to enter the Halt-MS trial, managed to qualify only after intensive physical therapy allowed him to walk the 100 meters required to meet study criteria. Halt-MS started in February 2006, and accruing its goal of 24 patients took a full four years.
Bexfield said the treatment “probably saved my life, and most certainly saved my quality of life. My wife and I are back to traveling the world, hiking on weekends, cooking for friends. Last year I even snowboarded again." He admitted that it wasn't pretty. “But," he added, "it was pretty awesome.”
While not every patient who undergoes stem cell therapy will reap benefits like these, it’s a gigantic step toward stopping disease progression and reversing the damage done to nerves.
In 2013, Tisch MSRCNY made stem cell science history when the U.S Food and Drug Administration (FDA) granted Investigational New Drug (IND) status to the organization for its adult stem cell therapy. “This exciting milestone took over ten years to reach,” the Indiegogo campaign states, “and brings indescribable hope to MS patients and their loved ones all over the world.”
You can become part of history by making your donation to this project. Visit: Tisch MS Center's FDA-Approved Phase I Stem Cell Trial for Multiple Sclerosis to learn more. Not only will you be helping stem cell treatment for MS become a reality; you will also be part of a crowdfunding movement that is sure to change the face of research forever.