On Sunday, October 21, 2012, I will be running the 2012 Amsterdam Marathon (26.2 miles) to honor and support the millions of people living with a rare disease globally and to raise awareness and money for an organization near and dear to my heart,Ben's Friends (www.bensfriends.org). Ben’s Friends is focused on improving the lives of those with rare diseases globally by creating online support communities.
As many of you know, I ran in the NY City Marathon (26.2 miles) on November 7, 2010 less than six months after open heart surgery at the Cleveland Clinic to raise awareness for people suffering from rare diseases and to raise money forwww.BensFriends.org, an international network of patient support websites for people with rare diseases. I finished the NY Marathon with a time of 3 hours 36 minutes and 50 seconds and most importantly with your help we raised over $7,600 for Ben's Friends. Since that fundraiser in November 2010, Ben's Friends has grown from 6,000 members to over 24,000 members, monthly unique visitors have more than doubled to now over 68,000 per month (up from 28,789 in November 2010) and unique page views have more than tripled since then to almost 600,000 per month (up from 195,354 in November 2010).
What is Ben's Friends (www.bensfriends.org)?
Ben's Friends builds on-line communities for folks with rare diseases.
The organization’s mission is to ensure that everyone with a rare disease has a safe place to connect with people like them. Ben’s Friends wants to start a support group for every rare disease in the world. BF now has over 33 communities and over 24,000 members, and had over 600,000 page views across all of its communities. The organization adds over 1,000 new members each month and has many more people who read without signing up. Ben’s Friends funds itself through generous donations and runs on a very tight budget. BF has over 100 volunteer moderators that help to run each of the patient communities and each community is run by moderators that have the particular condition. Currently nobody at Ben's Friends takes a salary and 100% of all proceeds are going towards creating new communities and helping members with the support that they need. Ben's Friends is a global social impact organization and not a non profit. Special thanks to the folks at IndieGoGo for helping organizations like Bens Friends that are not 5013c but are trying to change the world.
Video message from the Founder of Ben's Friends, Ben Munoz http://youtu.be/6c4UJ5P5tHQ
Here are a couple sample networks where the real magic happens:
and many more as you can see from the main website – www.bensfriends.org
Additional Information about Ben’s Friends
Follow Ben’s Friends on twitter @bensfriends
Here is a 60 second video that explains organization: http://youtu.be/YBeRFnJkleU
Blog has tons of amazing Patient Testimonials: http://blog.bensfriends.org/
Thank You and My Story
I would like to thank my incredible surgeons, medical professionals and physical therapist for my health. I also want to thank my amazing friends and family for all of their support throughout all of my injuries and six major operations. A special thanks to my amazing heart surgeon (Dr. Mihaljevic) and to the folks at the Cleveland Clinic and at Intuitive Surgical. I would not have been back in the gym three weeks post open heart surgery to close my rare disease, Atrial Septal Defect, and been able to run in the NY City Marathon less than six months post open heart surgery without their help and the support of my family, friends and the amazing folks at Ben’s Friends! Thank you!
I am very excited about running in the Marathon this weekend but more importantly about raising money for an amazing cause, www.bensfriends.org. Some might say my story is inspirational but I would beg to differ. I am just one of the 24,000+ and growing inspirational stories associated with www.bensfriends.org and its 33+patient communities. As a result of Bens Friends, I continue to meet amazing and inspirational people with rare diseases. My friends and fellow BF members, Ben Munoz in Texas and Alan Thomas in Wales, are great examples. In 2006, Ben Munoz suffered a life-threatening brain hemorrhage (AVM). He created an online support community (www.avmsurvivors.org ) so that he could connect with other patients. The support he received, and later, gave within that community led to the founding of Ben's Friends. In 2000, Alan was diagnosed with the rare condition, Cerebella Ataxia. Despite having this condition which impacts his coordination and requires him to be in a wheelchair the majority of the time, he does everything and keeps a positive attitude about life. Ben, Alan and the 24,000+ members of Bens Friends are my inspiration and I hope you will help us with a sponsorship!
Please contribute what you can and more importantly, spread the word the aboutwww.bensfriends.org and my story so that people with rare diseases know there is a place where they can find support and information. Nobody with a rare disease has to suffer alone.