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About The Event

Rowe's Research Runners Eighth Annual Walk, Run, Roll

We’re back in-person this year! As always, a virtual option exists as well.

  • When: October 13, 2024 at 2 PM

  • WherePennsylvania Military Museum, Boalsburg, PA

  • What: Rowe’s Research Runners One Mile Walk, Run, Roll and Reception featuring Alliance of Heroic Hearts, snacks, and maybe some other surprises!

  • How: In-person or Virtual. Walk/Run/Roll or whatever you can do. You can ‘run’ from bed if that meets your needs best! 
     

Register for the Event: Registration is $15 (virtual) or $20 (in-person). For those who register and fundraise, every dollar you raise goes directly to Dr. Rowe’s clinic. You'll have the opportunity to win prizes, too.

Note: Registration does not include a shirt. To get an event shirt (plus lots of other goodies), see our online store!

In-person registrants will be asked to sign a limited release of liability waiver before participating.
 

On event day, wear your shirt or other RRR item and go for a walk/run/roll.  Take photos and tag us (@rowesresearchrunners on Facebook and Instagram) to help raise awareness and highlight your participation!

Fundraise  *  Increase Awareness  *  Facilitate Connections

The mission of RRR is to fundraise, increase awareness, and facilitate connections for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), dysautonomia, and related illnesses (now including Long COVID).

Who is Dr. Peter Rowe?

Dr. Rowe is a world-renowned doctor who specializes in treating ME/CFS, dysautonomia, and related illnesses (now including Long COVID).  Dr. Rowe’s patients know firsthand how his commitment to research, mentoring, teaching, advocacy, awareness, and, most of all, patient care, impacts lives.  His humanity, intelligence, compassion, empathy, determination, and sense of humor are extraordinary.

 

As we face an epidemic of these illnesses, limited funding, and a shortage of research and practitioners, it’s more important than ever to continue supporting Dr. Rowe’s more than 30 years’ worth of work.

 

Dr. Rowe’s groundbreaking research, beginning with his study identifying a subset of chronic fatigue patients who also had dysautonomia, led to him receiving 5,000 calls in one week seeking more information or a referral to the clinic.  Since then, he’s continued to explore hypermobility in patients with ME/CFS and dysautonomia; identify abnormal responses to physical exams and in turn develop a unique, effective, and highly specific physical therapy routine; and identify milk protein allergy in a subset of patients.  And that’s just the tip of the iceberg!

 

Dr. Rowe is a frequent speaker and participant in meetings, conferences, and dysautonomia organizations, where he shares his highly valued expertise.  He is one of only a handful of specialists in the U.S. and is now treating Long COVID patients as well as his ME/CFS and dysautonomia patients.

 

Click here  to see Dr. Rowe’s official Johns Hopkins page.

 

Donating directly to Dr. Rowe via Rowe’s Research Runners ensures that your money goes a long way towards helping others with these complicated, and often debilitating, illnesses.

Who is Dr. Rowe?

Who is Emily Steffensmeier?

Emily came down with a mysterious “flu-like” illness approximately one month after her graduation from Davidson College.  She has now lived with dysautonomia and ME/CFS for more than 20 years, 15 of which she spent bedridden or homebound.

 

After six years of searching, and almost 100 doctors later, she found Dr. Peter Rowe at Johns Hopkins Children’s Center.  She has now been his patient for nearly two decades.  Because of his tireless, “never give up” approach, Emily has experienced an improved quality of life, although she continues to face long-term challenges.

 

Emily feels that her story is a familiar one to millions of people around the country who have fought to be believed, searched for care, and grieved lost dreams.  Rowe’s Research Runners is her way of turning her grief and loss into light and hope.

What Are ME/CFS, Dysautonomia, and Long COVID?

  • ME/CFS is a complex illness defined by pervasive, overwhelming fatigue that is not improved by rest.  ME/CFS often gets worse after any activity, whether it’s physical or mental (this is called post-exertional malaise, or PEM).  Other symptoms include problems with sleep, thinking, and concentrating; pain; and dizziness.  According to the CDC, at least one in four ME/CFS patients is bed- or house-bound for long periods of time.  A great resource to learn more about ME/CFS is the Solve ME/CFS Initiative website.

 

  • Dysautonomia refers to a group of medical conditions caused by problems with the autonomic nervous system (ANS).  The ANS controls involuntary bodily functions like breathing, heartbeat, and digestion.  When it doesn’t work as it should, it can cause heart and blood pressure problems, trouble breathing, and other related symptoms.  Want to learn more?  Check out Dysautonomia International  and the Dysautonomia Information Network .

 

  • Long COVID is thought to be similar to ME/CFS.  Also known as Post-Acute Sequelae of SARS-CoV-2 infection (PACS), it is a condition that arises after acute infection and often includes shortness of breath, fatigue, and “brain fog” but can also involve a wide range of debilitating problems in the heart, brain, lungs, gut, and other organs.  Interested in learning more?  Take a look at the PASC Dashboard and related pages!

Why Raise Money for ME/CFS, Dysautonomia, and Related Disorders?

At her best, Emily functions at a level of about 60% of a “healthy person”; at her worst, she can be as low as 25%.  She dedicates her energy and spoons to a mission that drives her: keeping Dr. Rowe’s legacy alive, raising money for an illness that receives little to no funding, supporting research, and creating connections among others with these illnesses.  She hopes that her story and her work will mean that in the future, others won’t face the same dismissive attitudes, lack of treatment, and shortage of practitioners that exists today.

 

These illnesses affect a staggering number of people:

  • According to Solve M.E. (an awareness and advocacy group for those with ME/CFS), it is estimated that between 5 – 9 million Americans, and 17 – 24 million people internationally, suffer from ME/CFS.  Source 

  • According to Dysautonomia International (an awareness and advocacy group for those with dysautonomia), over 70 million people worldwide suffer from some form of dysautonomia.  Source

  • Recent estimates from the American Academy of Physical Medicine and Rehabilitation indicate that anywhere between 10 – 30% of those who contract COVID-19 will continue on to have Long COVID; that’s between 3 – 10 million people.  Source

 

Unfortunately, there are no cures at this time for any of these conditions.

 

ME/CFS and dysautonomia receive one of the lowest amounts of government funds among illnesses, and Dr. Rowe depends on philanthropy to support his research.  Money raised via RRR also allows him to hire research assistants, which has directly resulted in his ability to publish several research papers and continue his work.

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