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EDS Wellness is proud to be at small part of Rare Disease Week & Rare Disease Day 2017!

This week, Ashton is representing EDS Wellness and the Tri-State EDS group from West Virginia at Rare Disease Day US at National Institutes of Health (NIH). Ashton applied for and received a grant/scholarship to attend Rare Disease Week. We are incredibly proud of Ashton and grateful to have Ashton support of EDS Wellness and representation for the EDS Community. Ashton is staying in DC to participate in Rare Disease Legislative/Lobbying efforts on Tuesday and Wednesday.

Additionally, Ashton is joined by Victoria Graham of Victoria Graham, Miss Frostburg 2017 & Victoria’s Warriors, who also founded The Zebra Network. We sent Ashton (and Victoria) a large box of EDS Wellness Swag and materials from our affiliates to help support their efforts and fill their table at Rare Disease Day at NIH.


Even more exciting, Ashton is leading the development and implementation of EDS Wellness’ Patient Advocacy and Group Support Leader Training/Education programs that will be launched later this year/early 2018.

Additional Rare Disease Day Links: 

  • You can watch Ashton & other advocates Rare Disease Day events live by going to http://rareadvocates.org
  • Check out Lifetime’s World Rare Disease Day episode here: http://www.thebalancingact.com/rare-disease-special-2/
  • Rare Disease Day US – http://www.rarediseaseday.org
  • Global Genes
  • NORD
  • https://rarediseases.org
  • The new website for Reds4Veds Day will be launched soon, this year all funds raised on #Reds4Veds Day will go direct into a research fund account. Annabelle’s Challenge in the UK is funding the Reds4Veds campaign so that 100% of all the proceeds will go into the research account which will be available for when an appropriate & agreed research project comes available. More details to follow.

On a personal note, I’m currently in Costa Rica for a yoga retreat with The Mindfulness Center working on my overall health and wellness, and completing my Yoga Instructor Training (YTT). I’m grateful to The Mindfulness Center for not only having an amazing YTT program, but also for working with EDS Wellness and providing our organization a safe and comfortable environment to welcome the EDS Community, hold our Mind-Body Strategies for Hypermobility with Chronic Pain program, and work on resources and programs for the hypermobility community (and help educate on how to practice yoga safely). I’m excited to continue my yoga training and education, by combining my 200hr yoga instructor certification, with my degree in Public Health and C.H.E.S. Certification, and continuing to develop through The Mindfulness Center’s Yoga Therapy Certification Program.

For this week, our “Just 5 Minutes” classes, Mind-Body Strategies for Hypermobility with Chronic Pain program and support group on Thursday’s at The Mindfulness Center, and HelpLine have been canceled. You are still welcome to send emails; however, I have limited internet availability and will not be able to answer emails right away. Emails and messages sent through the EDS Wellness Facebook page, or to my personal Facebook account will be answered next week.

Even though my trip is personal, I am using the time to catch up on EDS Wellness projects and the planning of the Wellapalooza 2017 Retreat and the Physicians Integrative Learning Conference. If interested, you can follow my trip on my Yoga Instructor Training Online Journal and Page – Hypermobile Yogi (www.hypermobileyogi.com).

Have a great week and we will see you next week on Monday at 11 am (EST) for EDS Wellness’ Just 5 Minutes” class.

– Kendra Neilsen Myles, Executive Director & Founder, EDS Wellness

 

 

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