Press > Media Kit

We look forward to working with you and helping people get support for their rare diseases! Please email press@bensfriends.org with media inquiries. Download a PDF of the media kit here.

Media Kit Table of Contents

1. Overview in 50 Words
2. Overview in 100 Words
3. Profile & Timeline
4. Ben's Bio & Headshot
5. Factsheet & Glossary
6. Communities
7. Stories
8. Testimonials

1. Overview in 50 Words

BensFriends.org is a mission-driven company dedicated to providing safe and supportive online communities for people affected by rare diseases. Founded by Ben Munoz after a 2006 stroke at age 29, BensFriends.org has a network of patient-to-patient communities and helps thousands of people around the world.  For more information, visit BensFriends.org.

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2. Overview in 100 Words

BensFriends.org is a mission-driven company with a network of online communities that provide support for people struggling with rare diseases. It was founded in 2006 by Ben Munoz after he suffered a serious stroke at age 29 caused by a rare condition called an AVM. During his ordeal, Ben realized how online communities could help support those suffering alone.  Since then, Ben and his friends have started numerous communities helping thousands around the world.  

More details:

• Main website: BensFriends.org
• Videos: YouTube.com/BensFriendsVideos
• Blog (including thank you's): Blog.BensFriends.org
• Facebook: Facebook.com/bensfriendsorg
• Twitter: @bensfriends

CONTACT: Ben Munoz (founder): ben@bensfriends.org

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3. BensFriends.org Profile & Timeline

Mission
To ensure that everyone in the world with a rare disease has a safe place to go and connect with others like them.

Core Value
Changing members’ lives everyday.

Model
BensFriends.org is bootstrapped and fully supported by donors, sponsors, and advertisers. An army of volunteers help out, no one is paid salary, and all donations go directly to funding the networks.

Timeline

• 2006:
• Ben Munoz suffers serious stroke caused by rare condition called an AVM.
• During recovery he's unable to find a support group of AVM stroke survivors and thus has no one to turn to who's been in his position.
• 2007:
• So Ben creates AVMSurvivors.org to ensure others with an AVM don't have to suffer alone.
• Dozens of people join in the first 2 months to find care, support, and friends
• 2008:
• Hundreds more join and express gratitude.
• Ben's grad school classmate and good friend Scott Orn sees power of Ben's online support community and they create #2: LivingWithTN.org and #3: LivingWithAtaxia.org/
• BensFriends.org is formed encompassing all of the rare disease communities
• 2009:
• AVMSurvivors.org passes 1,000 members
• Ben and Scott launch #4: ALDSupport.org
• 2010:
• New friends join the team to help Ben achieve his mission, including launching new communities, raising money, launching a newsletter, and supporting more members.
• Blog launched with updates, heartwarming thank you's, and amazing stories
• BensFriends.org passes 20 communities
• BensFriends.org passes 7,000 total members
• 2011:
• As of Oct 1, 2011, BensFriends.org has 25+ communities & 12,000+ members

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4. Ben'S Bio & Headshot

Ben created our first patient community so that he could find someone to connect with while recovering from a stroke. He and Scott realized what an impact a compassionate community could make in the life of a patient and began creating more patient communities for people with other rare diseases. Ben was formerly a software developer at eToys and MediaPlatform. Ben is a graduate of Stanford University and Kellogg School of Management. Email Ben at ben@bensfriends.org.

"I'm forever thankful to the neurosurgeon for saving my life. However, each time I left the doctor's office or the hospital during my treatment and recovery from the brain hemorrhage, I felt lost and lonely. How am I supposed to know what to do next? The first few months after my brain surgery was an emotional roller coaster.

The turning point came when I was put in touch with a friend of a friend who had been through a brain hemorrhage like mine and knew what it was like. We spoke for a long time and he answered the million questions that I had about treatment and recovery. I wanted desperately to connect with others who also had an AVM brain hemorrhage and talk more about the emotional aspects of this life-changing experience.

I was able to put together a good enough web site to invite a few people from a mailing list to come join me in an open discussion of what we were going through. I was so thankful to connect with others who knew what I was going through and members who joined felt the exact same way. It became apparent as the community doubled in size, again, and again, that we had created something special.

We wanted to share that emotional connection with patients of other rare diseases, so we created Ben's Friends."

--Ben Munoz

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5. BensFriends.org Fact Sheet & Glossary

What is a rare disease?

A disease or disorder is defined as rare in Europe when it affects less than 1 in 2,000 citizens and in the USA when it affects fewer than 200,000 people. Rare diseases may affect more than 60 million people worldwide.

Stats

• 25+ Support Group Communities (up from 4 at the end of 2009)
• 75+ Moderators from around the globe volunteer their time to support and help out
• 12,000+ members (up from 2,300 at the end of 2009)
• Still 6,000+ rare diseases
• Still 25 million Americans with rare diseases (& 350 million worldwide): 1 in ~15 people

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6. BensFriends.org Communities

Acute Disseminated Encephalomyelitis (ADEM, Immunological System) - An immune mediated disease of the brain that usually occurs following a viral infection but may appear following vaccination, bacterial or parasitic infection, or even appear spontaneously.

ADHD - Attention deficit hyperactivity disorder (ADHD, or AD/HD or ADD) is a developmental disorder. It is primarily characterized by "the co-existence of attentional problems and hyperactivity, with each behavior occurring infrequently alone" and symptoms starting before seven years of age.

Adrenoleukodystrophy (ALD; Nervous System, Endocrine System) - Adrenoleukodystrophy describes several closely related inherited disorders that disrupt the breakdown (metabolism) of certain fats (very-long-chain fatty acids).

Arteriovenous Malformation (AVM; Circulatory System) - Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth.  Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body.  Most people with neurological AVMs experience few, if any, significant symptoms.   The malformations tend to be discovered only incidentally, usually either at autopsy or during treatment for an unrelated disorder. But for about 12 percent of the affected population (about 36,000 of the estimated 300,000 Americans with AVMs), these abnormalities cause symptoms that vary greatly in severity.

Ataxia (Nervous System) - People with ataxia have problems with coordination because parts of the nervous system that control movement and balance are affected. Ataxia may affect the fingers, hands, arms, legs, body, speech, and eye movements. The word ataxia is often used to describe a symptom of uncoordination which can be associated with infections, injuries, other diseases, or degenerative changes in the central nervous system. Ataxia is also used to denote a group of specific degenerative diseases of the nervous system called the hereditary and sporadic ataxias which are the National Ataxia Foundation's primary emphases.

 

Atrial Septal Defect (ASD; Circulatory System) - Atrial septal defect (ASD) is a congenital heart defect in which the wall that separates the upper heart chambers (atria) does not close completely. Congenital means the defect is present at birth. 

Brain Aneurysms (Nervous System) - A brain aneurysm (AN-u-rizm) is a bulge or ballooning in a blood vessel in the brain. It often looks like a berry hanging on a stem. 

Charcot Marie Tooth (Nervous System) -  Charcot-Marie-Tooth disease is a group of inherited disorders that affect the peripheral nerves (those outside the brain and spine). 

Chiari Malformation (Nervous System) - Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance.

Chronic inflammatory demyelinating polyneuropathy (Nervous System) - CIDP is a neurological disorder characterized by progressive weakness and impaired sensory function in the legs and arms.

Crohn’s Disease (Digestive System, Endocrine System) - Crohn's disease is a form of inflammatory bowel disease (IBD). It usually affects the intestines, but may occur anywhere from the mouth to the end of the rectum (anus). 

Eagle Syndrome (Musculo-Skeletal) - Eagle Syndrome is a condition where elongated facial bone (temporal styloid process) (more than 30mm) is in conflict with the adjacent anatomical structures.

Erythromelalgia (also known as Mitchell's disease, acromelalgia, red neuralgia, or erythermalgia) - Erythromelalgia is a rare neurovascular peripheral pain disorder in which blood vessels, usually in the lower extremities (or hands), are episodically blocked (frequently on and off daily), then become hyperemic and inflamed.

Fibromyalgia (Multiple: Nervous, Immunological, Endocrine) -  Fibromyalgia is a syndrome in which people experience long-term, body-wide pain and tender points in joints, muscles, tendons, and other soft tissues.

Glossopharyngeal Neuralgia (GPN; Nervous System) - Glossopharyngeal neuralgia is a condition in which there are repeated episodes of severe pain in the tongue, throat, ear, and tonsils, which can last from a few seconds to a few minutes. 

Hepatitis C - Hep C is an infectious disease primarily affecting the liver, caused by the hepatitis C virus (HCV), which is spread by blood-to-blood contact. The infection is often asymptomatic, but chronic infection can lead to scarring of the liver and ultimately to cirrhosis, which is generally apparent after many years.

Lupus (Immunological) - Systemic lupus erythematosus (SLE) is a chronic autoimmune disorder. SLE may affect the skin, joints, kidneys, and other organs.

Multiple Myeloma (Blood) - Multiple myeloma is a cancer that begins in plasma cells, a type of white blood cell. These cells are part of your immune system, which helps protect the body from germs and other harmful substances. In time, myeloma cells collect in the bone marrow and in the solid parts of bone.

Myostitis (Immunological, Musculoskeletal) - Myositis is inflammation of your skeletal muscles, which are also called the voluntary muscles. These are the muscles you consciously control that help you move your body. An injury, infection or autoimmune disease can cause myositis.

Primary Sclerosing Cholangitis (PSC; Digestive System, Immunological System) - Sclerosing cholangitis refers to swelling (inflammation), scarring, and destruction of the bile ducts inside and outside of the liver. 

Psoriatic Arthritis (PsA; Immunological) - Psoriatic arthritis is an arthritis  that is often associated with psoriasis  of the skin. 

Synovial Sarcoma (Immunological, Musculoskeletal) - Synovial sarcoma is a type of soft tissue sarcoma. Soft tissue sarcomas are cancers of the muscle, fat, fibrous tissue, blood vessels, or other supporting tissue of the body, including synovial tissue. Synovial tissue lines the cavities of joints, such as the knee or elbow, tendons (tissues that connect muscle to bone), and bursae (fluid-filled, cushioning sacs in the spaces between tendons, ligaments, and bones). Although synovial sarcoma does not have a clearly defined cause, genetic factors are believed to influence the development of this disease.  

Tourette’s Syndrome (Nervous System) - Gilles de la Tourette syndrome (Tourette Syndrome or TS) is a neurological disorder which becomes evident in early childhood or adolescence before the age of 18 years.  Tourette syndrome is defined by multiple motor and vocal tics lasting for more than one year.  The first symptoms usually are involuntary movements (tics) of the face, arms, limbs or trunk.  These tics are frequent, repetitive and rapid.  The most common first symptom is a facial tic (eye blink, nose twitch, grimace), and is replaced or added to by other tics of the neck, trunk, and limbs. 

Trigeminal Neuralgia (Nervous System, Musculo-Skeletal) -  Trigeminal neuralgia is a nerve disorder that causes a stabbing or electric-shock-like pain in parts of the face. 

Von Willenbrand’s Disease (Blood) - Von Willebrand disease is the most common hereditary bleeding disorder. 

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7.STORIES

Race car - AVMSurvivors.org member, Michael Hunt, painted his race car with our logo!



Tattoos - We've had at least 2 members get tattoos with one of our logos! How's that for loving a brand and what we do!?



Fundraising - John Stamler, moderator of ASDSurvivors.org and LivingWithVWD.org, raised over $7,000 for BensFriends.org while running the NYC marathon 6 months after open heart surgery.



Saving a life - Anna (from Sweden) reached out to/for her friend in across the globe preventing her from committing suicide (livingwithtn.org).

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8. TESTIMONIALS

I have to say I received so much love from you guys just in the first day I found this site. –Evett 

This site is incredible. I can see how many lives have been touched. Being able to connect to people all over the world who suffer from AVM is so important. It reaffirms that while it can be agonizing to battle AVM, we don’t have to do it alone. Hope is out there. Thank you so much! –Melanie

Thank you for setting this wonderful site up. I truly feel a part of a wonderful family. –Chris

I felt so alone when I was going through my major surgeries. This is a wonderful place you have created to bring people together with this rare condition. Thanks again and wishing you the best. –Sandi  

Thanks Ben. You and your friends created a WONDERFUL website. Friendly, caring folks who want to help each other - that's what a support group is all about! –Patti

We are proud to say in the past year and a half, our community, which is free to all members, has grown to 2,000 members. With deep gratitude, we want to thank Ben for his vision, which has allowed the creation of many other support communities for those affected by rare conditions. –The Brain Aneurysm Foundation Support Community

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CONTACT

Please email ben@bensfriends.org with media inquiries.  We look forward to working with you and helping people get support for their rare diseases!

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