March 10,2019 – Ben’s Friends, our network of patient communities and Rare Disease Review, a medical and health policy journal hosted a miniconference at Hart House, Toronto. The Conference featured a variety of esteemed speakers, all joined together and shared on their expertise and experience in their individual fields. Ben Munoz, co-founder of Ben’s Friends joined the conference and talked about the challenges of having a rare condition and the importance of peer to peer support when dealing with a rare condition.
Ten Ben’s Friends Members and Friends are traveling to Glacier National Park This August for five active days to prove rare Disease Can’t stop – us not on Land or on Water and to raise money to build ten new Ben’s Friends Communities.
Day 1 & 2: Seven Members of our Team are backpacking from West Glacier Montana to the Head of Harrison Lake in the glacier backcountry to camp and fish The rest of the team will be hiking/scootering the Rocky Point Nature Trail on Lake McDonald:
Day 3: The entire team will be taking on the class 2 & 3 rapids of the Middle Fork of the Flathead river rafting from Moccasin Creek to West Glacier:
Day 4: The entire Team will be taking the walk of the cedars on this wheelchair and scooter accessible trail. Seven Members of the team will divert at Avalanche Falls to Avalanche Lake.
Day 5: The entire team will hike/scooter the Swift Current Nature trail At the midpoint of this trail seven members of the team will board a 1930’s wooden boat and cross Lake Josephine where they will hike to and climb on Grinnell Glacier. Before returning to Swift Current Lodge joining the rest of the team to go up the Iceberg Lake trail for Grizzly bear and moose viewing.
Our team’s efforts will result in 500 miles of hiking and paddling. This year’s trip is full, but next year is already being planned. But you can still participate. Would you consider pledging a donation for every mile traveled? Even a penny a mile can help support the mission of Ben’s Friends.
Please check out and SHARE our Go Fund Me campaign at:
The following new communities were started in 2018, many of which represent co-conditions that occur with Rare Diseases already supported by Ben’s Friends Patient communities and may be of interest to our existing members:
LivingwithChronicPelvicPain Community – Chronic pelvic pain (CPP) is a disabling disease that causes distress as the quality of life of CPP patients is vastly diminished. In addition, CPP is a public health crisis and is a burden on healthcare expenditure. In the United States, the annual costs for the diagnosis and treatment of CPP are 2.8 billion US . Moreover, to the indirect cost resulting from the absence from work and CPP associated family problems add 550 million US more making the economic burden more than 3.4 billion US $ (Mathias et al., 1996). Yet, the diagnosis of CPP is usually complicated as there are no gold standard guidelines that clearly define this syndrome. Although we have a limited understanding of its etiology, CPP has been found to be correlated with central sensitization, painful bladder syndrome, irritable bowel syndrome, endometriosis and adhesions. As such, in the evaluation of patients, it is imperative to take a comprehensive patient history. Performing physical examinations and ultrasound imaging is of particular value to elucidate the etiology of pain. As CPP patients are at risk for psychological disorders, psychological assessments are critical to diagnose associated psychological disorders and to take these into account in planning a treatment plan for patients. By such evaluation techniques, medical professionals can provide better diagnostic service and patient care to people with CPP.
LivingWithDysautonomia Community – Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death. Included conditions are **Postural Orthostatic Tachycardia Syndrome (POTS), Neurocardiogenic Syncope (NCS), and Multiple System Atrophy (MSA)*
LivingWithEpidermolysisBullosa Community – Epidermolysis Bullosa (ep-i-der-mo-lie-sis bu-low-suh), or EB, is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States (approximately 200 children a year are born with EB). There is no treatment or cure. There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, often pervasive and debilitating, and is in some cases lethal before the age of 30. EB affects both genders and every racial and ethnic background equally. Daily wound care, pain management, and protective bandaging are the only options available for people with EB.*
LivingWithIdiopathicPulmonaryFibrosis Community – Idiopathic pulmonary fibrosis (IPF) is a type of lung disease that results in scarring (fibrosis) of the lungs for an unknown reason. Over time, the scarring gets worse and it becomes hard to take in a deep breath and the lungs cannot take in enough oxygen. **IPF is a form of interstitial lung disease, primarily involving the interstitium (the tissue and space around the air sacs of the lungs), and not directly affecting the airways or blood vessels. There are many other kinds of interstitial lung disease that can also cause inflammation and/or fibrosis, and these are treated differently. It is important to work with your doctor to determine if you have IPF or another form of interstitial lung disease.
LivingWithNephrotic Syndrome Community – Nephrotic syndrome may occur when the filtering units of the kidney are damaged. This damage allows protein normally kept in the plasma to leak into the urine in large amounts, which reduces the amount of protein in your blood. Since the protein in the blood helps keep fluid in the bloodstream, some of this fluid leaks out of the bloodstream into your tissues, causing swelling, called edema. The swelling may be most noticeable in your legs after you have been standing and around your eyes when you first get up in the morning. Eventually, the swelling in your legs may be there all the time, and it may also occur in other parts of your body. You may notice that your urine foams more than usual because of the amount of protein in it.
LivingWithRaynauds Community – Raynaud’s (ray-NOHZ) disease causes some areas of your body — such as your fingers and toes — to feel numb and cold in response to cold temperatures or stress. In Raynaud’s disease, smaller arteries that supply blood to your skin narrow, limiting blood circulation to affected areas (vasospasm). Women are more likely than men to have Raynaud’s disease, also known as Raynaud or Raynaud’s phenomenon or syndrome. It appears to be more common in people who live in colder climates. Treatment of Raynaud’s disease depends on its severity and whether you have other health conditions.
LivingWithSarcoidosis Community – Sarcoidosis is the growth of tiny collections of inflammatory cells (granulomas) in different parts of your body — most commonly the lungs, lymph nodes, eyes and skin. Doctors believe sarcoidosis results from the body’s immune system responding to an unknown substance, most likely something inhaled from the air. There is no cure for sarcoidosis, but most people do very well with little or only modest treatment. In half of cases, sarcoidosis goes away on its own. In a few cases, however, sarcoidosis may last for years and may cause organ damage.
LivingwithSleepDisorders Community – Sleep disorders number around 88, but most sleep specialists spend much of their time treating the top five: insomnia, sleep apnea, narcolepsy, restless legs syndrome, and periodic limb movements. About one-third of the population has some form of insomnia at any given time, and 10% of that group has chronic insomnia. According to the National Sleep Foundation, a large majority (75%) of Americans say they’ve had at least one symptom of a sleep problem a few nights a week or more within the past year. Ben’s Friends sponsors a separate community for narcolepsy at LivingWithNarcolepsy.org
One of the new sites we are especially excited about is rebuild of LivingWithRareDisease Community This site now contains links to all our communities as well as an RSS feed of the latest activity in all our community. With the framework of this site, we have housed, a number of instructional videos and slide shows on how to use the Ben’s Friends Communities. These can be accessed from you regular community.
We also have live tech support to help with your computer problems. The support chat is monitored throughout the day by computer geeks who can help with computer issues only. If they are not online, you can leave a message and one of them will get back to you soon.
There are some exciting things happening now and through out 2019 that will continue to make Ben’s Friends the best online support resource for Rare Disease. We’ll keep you posted.
Thanks for a great year and Thank you for your Participation. If you have been away for a while, PLEASE check in and give us an update. Not a day goes by that one of our current members asks about you.
Antidote, a digital health company who aims to accelerate the development of breakthroughs treatments, making medical research accessible to all, held a roundtable discussion named, “How are Rare Diseases Treated?: An Advocate Conversation”. Ben Munoz, Co-Founder, Ben’s Friends joined the conversation as they delve into the role of medical research in the rare disease space. Read more from Antidote’s post.
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Ben’s Friends History
When we started Ben’s Friends Patient Support Communities in 2007, our mission was to provide support for the millions of patients with rare diseases across the world. Ben Munoz, our co-founder, had suffered from a rare AVM, kind of like a brain aneurysm, and he couldn’t find a single person in the world to talk to about his condition. Before Ben’s Friends, the lack of information and personal connection meant that patients with rare diseases had to suffer through their disease alone.
We knew that by leveraging the power of the Internet, we could bring together patients across the world. We were recent Kellogg MBA’s with very little money and we had an inclination that the communities would have a hard time monetizing. That meant that venture capital funding would be difficult to find and we were better off going the 501C3 non profit route.
In 2007, Ning Was a Godsend
We were resourceful and found Ning. At the time, Ning was piloted by a team that included Marc Andreessen, the Co-Founder of Netscape, and was backed by some of the finest venture capitalists in the world. Ning had the resources that we didn’t to build beautiful and functional social networking software. To Ben’s Friends, Ning was a godsend and we enthusiastically built over 35 distinct rare disease patient support communities on it.
Ben’s Friends flourished and we became one of the largest communities for rare diseases in the world. We recruited a volunteer moderator group of hundreds of fellow patients and loved ones that eventually provided support to millions of patients in need. The volunteer moderators are the real heroes of Ben’s Friends. They worked tirelessly and for free to make sure others didn’t suffer alone.
Ben’s Friends Needed A New Home
As the venture capital dried up, Ning was acquired by different corporate entities. Ning became severely underfunded and the quality of the service suffered. Ben’s Friends needed a new home.
Discourse Welcomed Ben’s Friends with Open Arms
After scouring the Internet and evaluating tons of software services, we chose Discourse. I’m happy to announce that with the heroic efforts of Jeff Atwood, Erlend Soghe Heggen, Neil Lalonde, Arpit Jalan and the rest of the Discourse Team, along with Tom, Rose and the rest of the Ben’s Friends Team efforts, Ben’s Friends is fully migrated off of Ning and the communities are humming on Discourse. Thank you Discourse!!!
Why did Ben’s Friends Choose Discourse?
Discourse is open source software. It’s a new company called “Civilised Discourse Construction Kit Inc.” (CDCK for short) formed by some of the same people who used to work on Stack Exchange, which is a very successful creator of online Q&A communities. Discourse is not the same software as Stack Exchange, but many of the lessons learned through that experience have been incorporated into Discourse. Discourse is constantly being improved by a cadre of open source developers. Ben’s Friends will be a huge beneficiary of their collective efforts.
The architecture of Discourse communities is brilliant, which leads to a very simple user experience for Ben’s Friends members. The software is hosted for a small fee (cheaper than Ning), which means Ben’s Friends doesn’t have to hire expensive IT staff or mess around with servers. Ben’s Friends on Discourse just works.
Discourse’s Export/Import Tool Greatly Simplified Migration
Jeff, Erlend, Neil Arpit and Team went the extra mile for Ben’s Friends by building an information Export/Import from Ning. That meant that the millions of posts, pictures and discussions on the Ben’s Friends communities were not lost. Members can find their old Ning content on Discourse! The Export/Import tool and support ended up saving Ben’s Friends hundreds of thousands of dollars.
Early Feedback on the Migration
The migration has been complete for only a week and we’re already seeing greater levels of interaction. Members are still getting used to the new format but they are sending us lots of encouraging notes. One immediate improvement has been the mobile interface. Over 50% of Ben’s Friends traffic comes from mobile devices and the new Discourse interface is easy to use.
Thank You Discourse
The transition from Ning to Discourse will be an inflection point for Ben’s Friends. Our donors underwrote the project with more than $40,000 of contributions. Many of those contributions came from community members and patients. It’s rewarding to be able to tell them that the migration was successful and Ben’s Friends can get back to the business of supporting patients and building new communities.
Thank you Discourse for letting Ben’s Friends focus on what we love – bringing support to patients with rare diseases across the world.
If you’re inspired by Ben’s Friends mission and the hundreds of volunteer moderators that make the support communities successful, you can support our growth by donating.
BioBlast Pharma will match each dollar up to $5,000 donated to Ben’s Friends for the migration of the Oculopharyngeal Muscular Dystrophy (OPMD) and Spinocerebellar Ataxia Type 3 (SCA3) patient communities to a new online platform. BioBlast is a clinical-stage global pharmaceutical company focused on the research and development of treatments for people living with rare diseases.
“We are focused on improving the lives of people suffering with symptoms of rare genetic diseases, like OPMD and SCA3,” stated Paul Firuta, Chief Commercial Officer, BioBlast, “and are excited about the opportunity to support Ben’s Friends in creating a new online homes for the OPMD and SCA3 communities.”
Ben’s Friends is hoping to complete the migration of the OPMD and SCA3 communities early 2016.
Ben’s Friends co-founder Ben Munoz shared in CMX Hub how to build trust from patients with rare diseases.
According to Munoz, making members feel welcomed is key. The welcome is the most important piece of the community membership cycle. When a new member joins, they are warmly greeted by lots of veteran members who trusted the community and so new members feel the warmth and friendliness. Read more from this article.
Rare disease “affect more people than the biggest headline-grabbing diseases on the planet.” View this infographic produced by CrowdMed to see the stats: