2nd Annual EDS Ride for a Cause 2016 – Benefitting EDS Wellness, Inc.

You must be there! Date To Be Confirmed!!!

The 1st official fundraiser benefitting EDS Wellness, Inc. & the 2nd Annual EDS Ride for a Cause at Zengo Cycle in Bethesda, MD!

I’m so excited to be putting together a fundraiser that supports the work that I do!

We will have drinks, snacks, and free giveaways!

You do not have to be local to participate, or be able to participate in the class. You can donate a bike seat in honor of yourself or honor of someone else.

Registration will be through Zengo Cycle’s website. An announcement will be made at the time that registration is live.


Official Facebook event page for the EDS Ride for a Cause 2016 is: https://www.facebook.com/events/814063915305731/

Here’s the #edsrideforacause post-event post & general information on event from last year – https://m.facebook.com/events/683516091712656?view=permalink&id=699041056826826. To view the gallery of pictures, go here.

To view the gallery of pictures for EDS Ride for a Cause 2014, go here. And if you want to learn more about EDS Wellness, and a bit more about me, including the work I do outside of EDS Wellness, you can read the information below.

Who is EDS Wellness?

EDS Wellness is a registered non-profit organization promoting health education, integrative healthcare, and wellness strategies for living well with Ehlers-Danlos syndrome (EDS), through print and digital media resources and materials, including seminars, webinars, conferences, coaching, and patient advocacy.

EDS Wellness provides education on various movement, nutrition, and mind-body techniques by collaborating with healthcare practitioners and like-minded organizations, to improve the quality of life and overall well-being of individuals living with EDS and other chronic, often invisible illnesses.

What projects is EDS Wellness, Inc. working on (i.e. Where do donated funds go?)

1. Wellapalooza – Integrative Health and Wellness conferences blending the best of modern medicine with integrative therapies for those suffering from chronic illnesses. The coolest health & wellness conferences (& retreats!) ever!

Wellapalooza is a big part of the mission of EDS Wellness and served as the final push to transition to a registered non-profit.

Our 2nd Wellapalooza is scheduled for June 9-12th, 2016 in Columbia, MD.


2. Moving Naturally with Hypermobility Seminars focused on natural movement, physical therapy, health & wellness for those with all types hypermobility syndromes, and the healthcare providers who care for them. Move More. Move Better.

We held our first Moving Naturally with Hypermobility seminar last June with great success. A proposal has been discussed and is being submitted to The Mindfulness Center in Bethesda, MD, in hopes of not only being able to hold these important seminars on our own but also being able to offer them in collaboration with the incredible people and programs associated with The Mindfulness Center.

We will also be offering these seminars regularly through live broadcasts, podcasts, and webinars.


3. Just 5 MinutesMotivation for life, and mission to heal, restore and empower the human spirit – one yoga mat at a time. #Just5Minutes at a time.

Just 5 Minutes is probably the hallmark project of all that I do and serves as the foundation for EDS Wellness, Inc. Growing and expanding on the Just 5 Minutes mission and brand is one of my personal goals this year, and it’s also one of the primary goals for EDS Wellness. The plan is to begin with live “Just 5 Minutes” broadcasts via Periscope. We will also record Just 5 Minutes video clips to upload to both YouTube and strengthflexibilityhealtheds.com while we build the Just 5 Minutes website.

Most importantly, we have been looking for the perfect yoga mat company to partner with – a company who also believes in the mission of Just 5 Minutes. By the end of the year, we should have very special yoga mats that say “Just 5 Minutes” on them. These yoga mats will be gifted to the people within the community(ies) that we serve through various classes, courses, conferences, retreats, and more. We will also sell these yoga mats through the EDS Wellness and Wellapalooza “swag” shop.


4. EDS Ride for a Cause – Charity events on bikes or on indoor spinning bikes, benefitting Ehlers-Danlos syndrome non-profit organizations (I.e. – this event!). EDS Ride for a Cause is a trademark of EDS Wellness, Inc. Information on how to set-up your own EDS Ride for a Cause is available to individuals, support groups, other charities and non-profit organizations, or companies, who would like to put together their own cycling fundraiser benefitting an EDS non-profit or support group. We provide information on the necessary step to take to organize a similar fundraiser, pertinent materials, and permission to use the EDS Ride for a Cause name.


5. Invisible Strength – Stronger 2 Gether – (previously known as “Our Stories of Strength” & Series title of the first EDS anthology Our Stories of Strength – Living with Ehlers-Danlos Syndrome) – anthology series sharing stories of strength, hope & perseverance from those living with chronic, often invisible illnesses. We are #Stronger2Gether.


6. Educational materials (print)Natural Healing with EDS brochure with Dr. Clair Francomano (available, but currently being redesigned by Kristi Posival), and an EDS and Kids project with Sarah of My Stripy Life, are just a few of our recent projects that are near completion.

7. Educational information & materials (digital) – Dissemination of reputable information on EDS and related conditions through various digital media platforms such as podcasts, live broadcasts on Periscope, webinars, recorded educational videos in collaboration with community physicians, and of course, Wellapalooza conferences.

8. Health Coaching & Patient Advocacy – EDS Wellness will be utilizing the MINDBODY app to integrate software into my sites for seminars, events, workshops and for scheduling health education/health coaching appointments. In the future, yoga and therapeutic exercise classes and appointments will also be scheduled through the MindBody app.

EDS Wellness affiliated projects (“other” EDS-related projects that do not fall directly under EDS Wellness):

1. Strength/Flexibility/Health/EDS – NEW and ONLY digital magazine for those striving to live well with EDS and other chronic medical conditions. New website redesign was launching soon!

“Strength, Flexibility, and Health, while living with Ehlers-Danlos syndrome (EDS) and it’s related conditions.”


2. The Hypermobile Yogi – Providing information and resources on how to practice yoga safely with joint hypermobility, including a series of 4 courses that will be available online once recorded. The Hypermobile Yogi website and related social media accounts, serve as my “journal” requirement for the yoga instructor program and follow my journey through the yoga instructor training program with The Mindfulness Center. The series of 4 classes on yoga for hypermobility syndromes, also fulfill a program requirement.


3. Mast Cell Research – Sharing research, information, and publications on Mast Cell Activation Syndrome (MCAS) and other Mast Cell Activation Disorders, including information on Dr. Afrin’s new book Never Bet Against Occam: Mast Cell Activation Disease published by Sisters Media, LLC.


4. EDNF HelpLine Volunteer Coordinator – For now and unless I’m informed otherwise, I will still support the Ehlers-Danlos National Foundation (the new Ehlers-Danlos Society) Helpline as their volunteer coordinator. Because EDNF is going through a ton of change themselves, we are still working out how I can help them meet the needs of the HelpLine, while also continuing to move forward with the work I do. One idea is to help expand the resources of the EDNF HelpLine by offering limited phone appointments, scheduled through the MindBody app – the same way health coaching appointments will be scheduled for EDS Wellness.

5. Kendra N Myles: Ehlers-Danlos Advocate, Health Educator, Speaker & Author – the “all else” page, because not everything falls under the EDS Wellness or even the affiliates umbrella. In addition to yoga instructor training, I’m enrolled in a Nutritious Movement “Move Your DNA” workshop by Katy Bowman. I’ve been working over the last year to build on my degree in public health by working towards a certification in therapeutic exercise through Katy Bowman’s Restorative Exercise Certification Program.

If you still are confused about how all of this works together, or how I keep it straight, my husband said it best the other night when we were discussing business-related projects. I commented to him that people keep telling me to “focus on one thing.” Below is my husband’s response.

“They don’t get it. It’s very clear – you have your medical sales business/distributorship that you’ve had for 10 years. You still work under it, are working on new opportunities to grow it, and it’s your main source of income. You also have small consulting/health education/health coaching business that you’ve had for 5 years, based on what you went to college for and your desire to help fill in the gaps in EDS community. You’ve been more focused on growing this business for the last few years, but working really intensley on it over the last year. Because the community(ies) that you serve need a lot of help, including the physicians that care for and treat the people within these communities, you needed to make sure that things were done the right way and done well; thus, meaning that you needed to start a small media/publishing business, in order to best serve everyone involved. However, you have all this charity work that takes up most of your time and specific projects that are part of your personal passion/mission. In order to complete these projects, you had to start a seperate non-profit organization, so that the people and organizations that you want to work with and those who want to help you, can actually do so with in a way that allows for a tax deduction. See? It’s pretty simple – when you look at the bigger picture and the broader mission behind all of the work that you do, it makes perfect sense. Most people have a hard time putting it all together, or seeing the bigger picture.”

So there you go… my husband said it best. And he gets it. He really gets it.

#Blessed #Gratitude #EDSAwareness #BeTheChange #EDSWellness #HypermobileYogi #InvisibleStrength #Stronger2Gether #EhlersDanlosSyndrome #LivingWithEDS #Just5Minutes #Genetics #ChronicIllness #InvisibleIllness #LiveEDSStrong #Hypermobility #NeverBetAgainstOccam #MCAS #MCAD #Spoonie #ChronicPain #JustKeepMoving #OurStoriesOfStrength #EhlersDanlos #HEDS #VEDS