Being among the thousands of Americans to participate in the ALS Ice Bucket Challenge felt good (minus the actual ice water on the head part). We were excited to read recently that major progress is being made for this deadly disease, in part due to funds raised from the challenge. The ALS Association recently announced that it will submit guidance to the FDA to improve the development process for drugs designed to slow or stop ALS. Nearly 100 people with ALS and caregivers, scientists, clinicians, and industry experts were involved, and their recommendations will guide the FDA with an ALS community-centered view of how it should approach therapies for this disease.
Amyotrophic lateral sclerosis (ALS), or Lou Gehrig disease, is diagnosed in about 6,400 people per year in the United States, according to the ALS Association. Devastatingly, life expectancy after diagnosis averages 3 years, although, some people live as long as 10 or 20 years with the condition. Early signs and symptoms, such as muscle weakness or stiffness, can dramatically affect function and often progress rapidly to muscle wasting, limb paralysis, and loss of the ability to speak, swallow, and breathe.
Participation in the ALS Ice Bucket Challenge, which sought to raise funds and awareness about this deadly disease, took off like wildfire. Celebrities, politicians, and physician assistant faculty and students were among the thousands who joined family and friends in dousing themselves with an icy mix. Videos capturing the startling effects went viral on Facebook and Instagram. A social movement emerged. The power of crowdfunding is being realized.
Crowdfunding, such as what occurred with the Ice Bucket Challenge, is gaining popularity. Crowdfunding or crowdsourced fundraising can be traced back to 2003, but this online method of fundraising really started to take off around 2011. GoFundMe, Kickstarter, and Indiegogo are popular platforms, and crowdfunding as a source of revenue for starting a business is increasingly being viewed as a viable alternative to bank loans and venture capital.
Medical crowdfunding—for research and to pay personal medical bills—also is increasing. Popular sites for raising money for personal medical causes are YouCaring and GiveForward. For many patients, crowdfunding is a lifeline that lets them pay for medical care without going into major debt, taking out second mortgages, or having to ask family and friends for money, which can be awkward. The human effect of crowdfunding, beyond the fundraising, struck the strongest chord with us. Givers become a part of a greater community and have an easy path to make a difference without leaving home—although, they might get wet. People telling their stories on crowdfunding sites can be deeply compelling. Donating to a crowdfunding appeal can feel more personal than a general or unrestricted gift to a charitable organization. How much more appealing is it to view a video or read the story of a person suffering from a disease, awaiting an organ donation or a cure, or simply unable to afford necessary medical care. This type of giving fosters generosity and the spirit of human kindness in the givers and also offers some modicum of control in choosing who is receiving their donation and for what reason. Creating, managing, and publicizing crowdfunding sites often is empowering and offers a vehicle for family and friends to do something for their ill or suffering loved one when they might not have the money to help out financially.
The success of the Ice Bucket Challenge demonstrates that many people want to contribute directly to medical research and see the results of their contributions in the creation of new procedures and medications. Also, people like to give to successful endeavors, and the broad success of the Ice Bucket Challenge was reinforced all across social media. In just 6 weeks, the ALS Association raised more than $112 million. In these times of ever-decreasing federal dollars for research, the crowdfunding phenomenon can prove instrumental in financing the next wave of new scientific research.Copyright © 2015 American Academy of Physician Assistants