About Ben's Friends Patient Communities
My name is Ben Munoz and my organization, Ben's Friends, builds Online Support Communities for Patients with Rare Diseases. Patients with rare diseases struggle to find support offline and online because these conditions lack the critical mass to organize local support groups and Internet sites don't cater to these patients because they are not economically viable through advertising.
Even your family lacks the information and understanding to give you all the support you need. It can be very lonely and depressing - I know, because 5 years ago while at Kellogg Business School, I nearly died from a rare condition similar to a brain aneurysm. Today, my friends and I have built a network of 30+ support communities, each catering to a specific rare condition. I'm asking for your financial support so we can continue supporting these 30+ communities (and growing) that serve approximately 30,000 patients and their loved ones a month.
My condition is called Arteriovenous Malformation (AVM) and it's extremely rare. I was saved by emergency surgery but 50% of the people who have an AVM bleed are not so lucky. My condition changed my entire outlook on life and I decided to give back to patients who have rare conditions by becoming a Doctor. After finishing business school, I enrolled at UT Austin to complete my medical school pre-requisites. This summer I took the MCAT and applied to medical school. I'm now on the interview trail, anxious to see where I'll be in the Fall.
While recovering from my AVM, I couldn't find a single support group in the Chicago area so I turned to the Internet for help. Unfortunately there were no Internet support groups for AVM patients either! I finally found the support I was looking for by creating my own group at AVMSurvivors.org. Other AVM patients found us and we grew into a close-knit online family of AVM survivors.
In 2008 we started more patient communities and Ben's Friends has been tripling in size every year since. Almost all of our members tell us that they have never before spoken to anyone with their rare disease in their entire lives! They are excited and comforted to find hundreds of people experiencing the same emotions they are experiencing. They don't feel so alone anymore.
Donations are Appreciated
We launched Ben's Friends as a social enterprise, to do good in the world while breaking even. Over 90 volunteer moderators (patients themselves) volunteer their time and none of us take any compensation for our efforts. We have also contributed over $20,000 of our own money because we believe in the cause. The very few online health sites that serve patients with rare diseases, including Ben's Friends, have a very difficult time generating revenue because the patient populations are so small and fragmented. Most shut down eventually. We don't want to charge a membership fee because most of our patients are on disability and money is very tight for them. To date, we've been incredibly fortunate to receive donations from friends and patients totaling over $15,000.
I'm writing to ask you for help in the form of volunteer time and/or a financial donation. We could use help getting the word out by leveraging your personal network. In addition, we would be incredibly grateful if you would make a donation to our fundraiser.
Our monthly costs are approaching $2,000 and a $100 donation would fund one of our communities for 3 months. A $500 donation would allow us to start a brand new patient community for a rare disease population that usually has no other option. We constantly have patients writing in to ask us to start a support group for them. We have a waiting list of 100 support groups that we could start tomorrow if we had the funds. If one of your loved ones has been touched by a rare condition, we would be happy to start a community for that condition.
Thanks for reading my story and for the support along the way. Ben's Friends is truly a little Internet miracle and we want to keep it going.
Main website: BensFriends.org