Update on the 2nd Annual #EDSRideForACause on May 30th, 2015!
Join us for a great event raising awareness for Ehlers-Danlos Syndrome (EDS) just as we wrap-up National EDS Awareness Month in May!
Last year’s #EDSRideForACause at Zengo Cycle in Bethesda, MD was a great success, so we are doing it again and making it even better this year! (See link below for pictures & details from last year’s #rideforacause).
More details will be announced as I work them out, but please “Save the Date” and sign-up on Zengo’s website. The plan is to expand on last year’s successful charity ride at Zengo and add a 2nd class this year, because we WILL fill-up the 1st class and are looking to host a post-party at the restaurant upstairs (details coming soon!). We are also celebrating the release of the Our Stories of Strength – Living with Ehlers-Danlos syndromee anthology by Our SOS Media, LLC.
Sign-up on: www.zengocycle.com. Here are some instructions:
– You first need to create an account on ZengoCycle.com
– Then pick the “EDNF Charity Ride Series” from the “buy a series” section on Zengo Cycle’s website.
– Last, click to “reserve” your spot/bike for the EDNF Charity Ride Event.
Anyone who cannot attend or does not live in this area can still contribute by “buying a bike” for $35 and someone will happily ride for them. Questions? Ask!
Snacks, t-shirts for participants, great post-workout tonics by Goûter, door prizes and other give-aways (awesome Zebra striped rainbow loom bracelets anyone?), including print copies of Our Stories of Strength – Living with Ehlers-Danlos Syndrome.
All proceeds will benefit The Ehers-Danlos National Foundation (EDNF).
Stay connected & updated on event details, sponsors, give-aways and door prizes through our Official Facebook Event Page: https://www.facebook.com/events/814063915305731/
Questions? Contact: Kendra Neilsen Myles or send an email to kendra@ourstoriesofstrength.com
Additional information & links:
– #rideforacause post-event post & general information on event from last year: https://m.facebook.com/events/683516091712656?view=permalink&id=699041056826826
– To learn more about #EDS, please visit: www.ednf.org
– To learn more about the Our Stories of Strength – Living with Ehlers-Danlos Syndrome anthology series, see links and additional information below:
– Click on: Our SOS Media’s PR Release to read the PR statement about Our Stories of Strength – Living with Ehlers-Danlos Syndrome via PR Web.
– Click here to be directed to Our Stories of Strength – Living with Ehlers-Danlos Syndrome on Amazon.com.
– To read Our SOS Media, LLC’s call for submissions for additional anthology titles, go here. 
Our SOS Media, LLC releases debut anthology in the Our Stories of Strength™ series featuring over 50 stories from people living with Ehlers-Danlos Syndrome in conjunction with Ehlers-Danlos Syndrome awareness month.
Ehlers-Danlos Syndrome (EDS) is classified as a rare disorder affecting 1:5000 people. Based upon recent research, the prevalence of EDS exceeds this number and could be as high as 1:100 to 1:200 people (Collins, 2015; Nielsen, 2013). Ehlers-Danlos Syndrome is a group of heritable connective tissue disorders that can cause a wide variety of symptoms throughout different body systems; each unique in presentation to the individual. The variety of symptoms and presentations proves challenging to the medical community in diagnosing and treating patients; many of whom are misdiagnosed and suffer as a result.
Co-owners Mysti Reutlinger and Kendra Neilsen Myles both live with Ehlers-Danlos Syndrome and associated comorbid conditons, which sparked the anthology inception and led to the business formation with core values of giving back to non-profit organizations, creating jobs for people living with invisible and chronic illnesses, and providing an outlet to those willing to share their stories through submissions in the Our Stories of Strength™ anthology series. Our SOS Media, LLC recognizes that it is through opening doors to needed conversations and sharing stories of strength, determination, and perseverance that we are able to facilitate positive changes to the way we live and help shape perceptions of those around us, as well as in the medical community.
“These are stories of hope and resilience, of strength under adversity, of self-reliance and new-found sources of support. They offer one core message to all who suffer from the diverse and difficult manifestations of EDS: You are not alone.” (Clair Francomano, MD)
“Included in the anthology are stories of adversity, misdiagnosis, heartbreak, and devastation turned to strength, determination, and perseverance. Each story submitted is reflective upon common issues faced to those living with the invisible illness and has been noted within the medical community as providing “doctors the strength to find solutions.” (Pradeep Chopra, MD)
Learn more about Our Stories of Strength™ by clicking here. You can also contact Mysti Reutlinger (307-256-8478) or Kendra Neilsen Myles (kendra@ourstoriesofstrength.com) for more information about stories from contributors near your community and how you can further awareness, education, and funding for studies.
Additional information on the Our Stories of Strength – Living with Ehlers-Danlos Syndrome anthology:
– At this time, the anthology is available via Amazon.com: http://amzn.to/1AUMPRc
– The Kindle version of the book is in full color.
– We are designing 2 printed versions of this book, one of which will be a full color table top display book. We will be passing along this information as we move closer to completion.
– Other digital formats will be available soon as well (iBooks, etc.)
– We have also applied for a specific number that we need in order to have this book sold in stores.