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#GivingTuesday is today — a day when people around the world come together to support causes that matter to them.

EDS Wellness needs your support now more than ever!

WHO WE ARE:

Over the past five years, EDS Wellness has slowly developed into an organization whose focus is on promoting health education, physician education, public health initiatives, integrative healthcare, and wellness strategies for living well with hypermobility syndromes, such as Ehlers-Danlos syndrome (EDS).  Since we incorporated as a nonprofit earlier this year and received 501(c)(3) approval, we’ve begun implementing our core initiatives and programs and developing collaborative strategies for new ones. Additionally, we’ve begun working on grant proposals and other funding sources to ensure that we can conduct research along with the implementation of our initiatives and programs. This research will provide critical and necessary feedback on which integrative therapies and programs prove most helpful for living well with EDS.

EDS Wellness focuses on what we can do, not what we can’t. 

All proceeds received from any of EDS Wellness’ fundraisers, EDS Ride for a Cause events, monies raised from other fundraising events, donations received, or proceeds earned from the sales of tax-exempt services and EDS Wellness swag, will be used to support various initiatives, programs and research efforts under the EDS Wellness umbrella.

Today is the day that counts: Don’t wait. Help us to help others by making your donation TODAY!

What is Ehlers-Danlos syndrome (EDS)?

Ehlers-Danlos syndrome (EDS) is a group of heritable connective tissue disorders that are caused by various genetic defects in the collagen protein used to make our connective tissues. It is believed that both genetic and epigenetic mutations, both to the structure or function of collagen, play a role in the various types of EDS. These disorders can cause a wide variety of complications throughout all body systems – Ehlers-Danlos syndrome is very much a multisystemic disorder. Previously believed to be rare, based on recent research, the prevalence of EDS is found to be far greater than current statistics state, or even higher. While there are several types of hypermobility syndromes, EDS being one type, experts estimate that up to 10% of the general population may have some degree of hypermobility, with women affected about more often than men. Many have suggested that EDS may be one of the most prevalent, yet under-diagnosed disorders.

Ehlers-Danlos syndrome is a set of true multisystemic conditions that not only affect the joints but can also affect each system in the body in various ways. EDS often occurs comorbidly to many chronic, more well-known medical conditions. Patients often bounce from doctor to doctor, searching for an underlying link to all of their seemingly unrelated ailments. Many healthcare providers try to help to no avail, due to lack of awareness on updated diagnosis and care guidelines, or definitive resources to help patients. Others, dismiss patients, often stating that their issues are “all in their head” and that nothing else could explain the reason someone would be so unlucky to acquire so many problems – even disability. Further complications arise because EDS and its ever-present sidekick conditions such as Mast Cell Activation Syndrome (MCAS), Gastroparesis, Dysautonomia and POTS, Chronic Fatigue Syndrome (CFS), and chronic pain conditions such as Fibromyalgia, are all far more common than was explained in medical school and they do tend to travel in “packs,” along with inflammatory connective tissues diseases, autoimmune conditions, neurological conditions, and endocrine disorders.

Sadly, far too many patients have lost their lives, due to misinformation, medical mistakes from improper healthcare or lack thereof, and from the general lack of awareness of how “real” EDS is. Sadly, some patients have even taken their lives – desperate to find relief from relentless feelings of isolation, chronic pain, and loss of function, not to mention the trauma and stress of living with a condition(s) that even some the best specialists in the worlds do not understand — or believe.

Currently, there is no cure. However, many symptoms can be prevented or treated as they arise and individuals can lead healthy, active, and fulfilling lives. Please donate today.

To learn more about Ehlers-Danlos syndrome, go to What is Ehlers-Danlos syndrome (EDS)?

Your donation will help EDS Wellness to:
  • Provide phone appointments and dedicated email support through the EDS Wellness’ HelpLine
  • Implement health education and support programs for patients and caregivers, incorporating integrative therapies and providing the resources necessary to help patients find the solutions that they so desperately need
  • Increase our Physician Learning Conferences, lunches, and roundtable dinners, which provide education on the complexities of EDS, help shorten the average time to diagnosis, and improve patient outcomes.
  • Expand our provider education campaigns and initiatives, which focus on disseminating updated diagnostic criteria for all types of EDS, providing proper guidelines for care, publishing print and digital educational materials and resources for patients, and managing our professional referral networks for healthcare providers.
  • Provide much-needed funding to record, produce and upload patient education videos with EDS specialists
  • The funds needs to build an interactive learning platform so that patients from across the world can access the resources and programs that EDS Wellness develops and implements
  • Help fund research initiatives focused on finding better treatment options and integrative solutions
  • Fund public health campaigns and global awareness efforts
  • Continue to hold Integrative Wellness Retreats for patients and caregivers, and provide financial support to help offset patients costs and provide a certain number of scholarships to each retreat
  • Provide tax-exempt services such as one on one wellness coaching, restorative exercise therapy, and patient advocacy
  • Offer weekly Mindfulness and Yoga for Hypermobility classes and workshops, focused on education, movement, and mindfulness in an intimate support group environment
  • Offer all classes and programs on various “virtual” platforms – most broadcasted live or offered through live webinar attendance (i.e., “Just 5 minutes” class offered 3x a week)
  • Find a yoga mat partner and launch the “Just 5 Minutes” mission and program. Read more by going to The Just 5 Minutes Mission
  • Continue to build a sound foundation for a “virtual “EDS Wellness Clinic” – one that provides “concierge” support with finding and making appointments with specific providers, and travel assistance, patient support, and advocacy when traveling to the greater Bethesda, Maryland area (and all other services, programs, and initiatives mentioned).
  • Take necessary steps towards providing the research and funding to build an Institute for Restored Movement and Integrative Medicine, offering accommodations for rehab programs and our Integrative Wellness Retreats, as well as provider offices.

 

EDUCATION. DIAGNOSIS. SOLUTIONS. 

We welcome your support and ask that you help us reach our goal to raise $10,000 by the end of the year. Up until now, EDS Wellness has been financially supported solely by personal family funds. Registration fees for conferences and workshops and few very generous donations allowed us almost to cover our overall net operational costs; however, to move forward on our intended path, it’s imperative that we receive donations from those within our community and from those who believe in the importance of EDS Wellness’ mission and initiatives, to help support the work that we do. We also need to continue working towards finalizing grant applications, funding proposals and regularly offering tax-exempt services and classes.

Please join the EDS Wellness community in the #GivingTuesday call to action

Donate NOW by Clicking HERE.

Share the wealth of kindness and compassion with your family, your community, and the world by supporting EDS Wellness today. Sharing this post with those who may be interested, or on social media helps too! We can thank you enough for generosity and support.

Every donation we receive directly benefits patients in some way. We are #Stronger2Gether.

More about EDS Wellness: 

Mission:

EDS Wellness is a 501(c)(3) non-profit organization promoting health education, integrative healthcare, research and wellness strategies for living well with hypermobility syndromes, such as Ehlers-Danlos syndrome (EDS), and related conditions through the publishing of print and digital media resources and materials, including seminars, webinars, conferences, wellness coaching and patient advocacy.

Vision:

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.

The foundation of EDS Wellness has truly been a team effort — and we need your help and support more than ever! To learn more, go to WHAT WE DO. We would love to have you join the EDS Wellness Movement!

Click HERE to make a secure online donation to EDS Wellness!

Looking for other ways to donate or support EDS Wellness? See below!

All donations are tax-deductible in accordance with 501(c)(3) regulations. We are happy to provide donation receipts for tax purposes. 

 

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