If you live in the United States or Canada, join The Ehlers-Danlos Society to help increase awareness of EDS and HSD by requesting a Proclamation for May Awareness Month!
A proclamation is a formal public statement and an official announcement of EDS and HSD Awareness Month in your local area. Make May officially Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) Month in your state or city by requesting a Proclamation.
Here are the most common steps to request a proclamation from a governor or mayor; however, some states and cities may vary regarding proclamation procedures.
Here are the most common steps to request a proclamation from a mayor or premier; however, procedures may vary depending on your province, territory, or city.
Step 1: Locate the Right Office
Step 2: Submit a Proclamation Request
Step 3: Follow Up
Step 4: Share the News!
A joint resolution is a formal declaration passed by both chambers of a state legislature (the House of Representatives and the Senate) to recognize an issue, cause, or awareness month. Unlike proclamations, which are typically issued for a single year, a joint resolution can create long-term recognition of EDS and HSD Awareness Month in your state.
Steps to Get a Joint Resolution Passed:
“My name is Nina Dowling. Although my home town is very small I wanted to get the word out and raise as much awareness as possible. Not only do I face challenges every day my sister-in-law has vascular EDS (vEDS) and faces challenges too.
“The Mayor of Many, Louisiana, presented me with a proclamation making May officially Ehlers-Danlos Syndrome Awareness Month and I was honored to do so and eager to learn more. Here is a pictures of me and Mayor Hable holding the proclamation. I also went live on Facebook featuring the ceremony.”
“My name is Nina Dowling. Although my home town is very small I wanted to get the word out and raise as much awareness as possible. Not only do I face challenges every day my sister-in-law has vascular EDS (vEDS) and faces challenges too.
“The Mayor of Many, Louisiana, presented me with a proclamation making May officially Ehlers-Danlos Syndrome Awareness Month and I was honored to do so and eager to learn more. Here is a pictures of me and Mayor Hable holding the proclamation. I also went live on Facebook featuring the ceremony.”
Thank you to Denise for participating in the Proclamation Challenge in the city of Santa Monica, USA.
“I was diagnosed with EDS after my ophthalmologist noted some specific issues with my eyes and insisted that they be investigated. Despite being diagnosed at a major research university hospital with supporting cardiac, ophthalmologic, dermatologic and orthopedic evidence, I have found that some medical professionals are openly hostile when they spot my EDS diagnosis in my chart. These negative preconceived notions about EDS, and EDS patients, make it incredibly difficult to receive needed care at times.
“This is one of the reasons I feel strongly that awareness is so important: it helps our medical professionals understand that the various types of EDS are real conditions that need to be treated with respect and compassion. I am so grateful to the city of Santa Monica and mayor Phil Brock for issuing this proclamation. Hopefully it will be one small step of many toward increased awareness, knowledge and care for EDS patients and their loved ones.”
Thank you to Denise for participating in the Proclamation Challenge in the city of Santa Monica, USA.
“I was diagnosed with EDS after my ophthalmologist noted some specific issues with my eyes and insisted that they be investigated. Despite being diagnosed at a major research university hospital with supporting cardiac, ophthalmologic, dermatologic and orthopedic evidence, I have found that some medical professionals are openly hostile when they spot my EDS diagnosis in my chart. These negative preconceived notions about EDS, and EDS patients, make it incredibly difficult to receive needed care at times.
“This is one of the reasons I feel strongly that awareness is so important: it helps our medical professionals understand that the various types of EDS are real conditions that need to be treated with respect and compassion. I am so grateful to the city of Santa Monica and mayor Phil Brock for issuing this proclamation. Hopefully it will be one small step of many toward increased awareness, knowledge and care for EDS patients and their loved ones.”
“The Governor of Nebraska signed a proclamation declaring May Ehlers-Danlos Syndromes Awareness Month! It was an honor to represent the Nebraska EDS Awareness and Support Group along with fellow members Kellie Osler and Courtney Hurd. Very special thanks to Brad Meurrens and the Omaha Westside High School Debate Team for spearheading this effort when 9th grader Leo was taken out of debate season due to his many knee surgeries. Advocacy is ageless.” – Wendy Hamilton
“The Governor of Nebraska signed a proclamation declaring May Ehlers-Danlos Syndromes Awareness Month! It was an honor to represent the Nebraska EDS Awareness and Support Group along with fellow members Kellie Osler and Courtney Hurd. Very special thanks to Brad Meurrens and the Omaha Westside High School Debate Team for spearheading this effort when 9th grader Leo was taken out of debate season due to his many knee surgeries. Advocacy is ageless.” – Wendy Hamilton
“Thanks to my fellow council members for voting to recognize May as EDS and HSD Awareness Month. My wife was recently diagnosed with EDS, and we’ve learned that it can be a hard disease, while being incredibly under-diagnosed and misunderstood. We wanted to do our part to bring awareness and hopefully help others. Thanks to fellow local folks with EDS for coming out to support the measure! In addition to the city’s proclamation, Governor of Virginia Glenn Youngkin graciously issued the proclamation for Virginia as well. I was honored to share his proclamation tonight at our meeting.” – Jake Holmes
“Thanks to my fellow council members for voting to recognize May as EDS and HSD Awareness Month. My wife was recently diagnosed with EDS, and we’ve learned that it can be a hard disease, while being incredibly under-diagnosed and misunderstood. We wanted to do our part to bring awareness and hopefully help others. Thanks to fellow local folks with EDS for coming out to support the measure! In addition to the city’s proclamation, Governor of Virginia Glenn Youngkin graciously issued the proclamation for Virginia as well. I was honored to share his proclamation tonight at our meeting.” – Jake Holmes
Thank you to Suchita Karnati who made May officially EDS & HSD Awareness Month in her hometown, St. Louis, MO, and her college town, Kansas City, MO!
“I wanted to bring awareness about EDS in my home state of Missouri. Unfortunately, the level of knowledge and care among the general public and the medical community in Missouri regarding the syndrome is extremely limited, making it difficult for patients to get the treatment they need. Due to the large gap in awareness and knowledge about this condition, I challenged myself to raise awareness at the state level.
“Through The Ehlers-Danlos Society, I have gained invaluable knowledge and education about EDS and its challenges. As a current medical student at UMKC School of Medicine, I plan to use this knowledge to better treat my future patients. Thank you to The Ehlers-Danlos Society, Quinton Lucas (Mayor of Kansas City), and Tishaura Jones (Mayor of St. Louis) for providing the knowledge and resources that have helped make this possible!”
Thank you to Suchita Karnati who made May officially EDS & HSD Awareness Month in her hometown, St. Louis, MO, and her college town, Kansas City, MO!
“I wanted to bring awareness about EDS in my home state of Missouri. Unfortunately, the level of knowledge and care among the general public and the medical community in Missouri regarding the syndrome is extremely limited, making it difficult for patients to get the treatment they need. Due to the large gap in awareness and knowledge about this condition, I challenged myself to raise awareness at the state level.
“Through The Ehlers-Danlos Society, I have gained invaluable knowledge and education about EDS and its challenges. As a current medical student at UMKC School of Medicine, I plan to use this knowledge to better treat my future patients. Thank you to The Ehlers-Danlos Society, Quinton Lucas (Mayor of Kansas City), and Tishaura Jones (Mayor of St. Louis) for providing the knowledge and resources that have helped make this possible!”
Thank you Desiree for making May officially EDS and HSD Awareness Month in New Jersey, USA!
“With May being Ehlers-Danlos Syndrome (EDS) Awareness Month, and having been one of the few with an early diagnosis, I wanted to continue to bring as much knowledge about the condition (and EDS types) as possible to help others receive theirs.
“Upon reaching out to Governor Murphy, I was lucky enough to get a proclamation signed for New Jersey to help create more awareness and, hopefully, more knowledge toward a cure or at least better care. I’m hopeful for a future where you don’t have to fight so hard to get the help they need.”
Thank you Desiree for making May officially EDS and HSD Awareness Month in New Jersey, USA!
“With May being Ehlers-Danlos Syndrome (EDS) Awareness Month, and having been one of the few with an early diagnosis, I wanted to continue to bring as much knowledge about the condition (and EDS types) as possible to help others receive theirs.
“Upon reaching out to Governor Murphy, I was lucky enough to get a proclamation signed for New Jersey to help create more awareness and, hopefully, more knowledge toward a cure or at least better care. I’m hopeful for a future where you don’t have to fight so hard to get the help they need.”
Thank you to LaShon Jackson-Johnson for taking part in the Proclamation Challenge and requesting a proclamation for Texas and the City of Keller.
“As a wife and working mom living with EDS, it was an honor to apply to help bring awareness to the condition. My children have also been diagnosed with EDS, and my hope is that my grandchildren and others will not have to wait 35 years without a proper diagnosis, unlike myself.
“I have been misdiagnosed with other illnesses and even told that it’s ‘all in my head’ like many others. My goal is to educate anyone who is willing to listen and learn until EDS and HSD are no longer unknown to so many.”
Thank you to LaShon Jackson-Johnson for taking part in the Proclamation Challenge and requesting a proclamation for Texas and the City of Keller.
“As a wife and working mom living with EDS, it was an honor to apply to help bring awareness to the condition. My children have also been diagnosed with EDS, and my hope is that my grandchildren and others will not have to wait 35 years without a proper diagnosis, unlike myself.
“I have been misdiagnosed with other illnesses and even told that it’s ‘all in my head’ like many others. My goal is to educate anyone who is willing to listen and learn until EDS and HSD are no longer unknown to so many.”
