EDS and CTD New England/MA Support Group

For years, Diana Cleaveland has led the effort to have May proclaimed Ehlers-Danlos Awareness Month in the state of Massachusetts. Below is a gallery of images documenting her successes and the fruitful support of so many talented and dedicated people in our community. You can click on the image of the proclamation to read its text.

The first picture (top left) is from the Proclamation in May 2015. From her post In our Facebook group, Diana wrote:

Many thanks to all who attended our Ehlers-Danlos Proclamation Awareness event at the Statehouse today: Firstly, Dr. Jeffrey Milunsky, Geneticist, The Center for Human Genetics (chginc.org), Linda Aaronson, for her incredible photography and radiant presence, Jon Rodis for his leadership, Lloyd, for his attendance and help, Lynn Julian, for her incredible personality/knowledge/speaking points Re: US Pain Foundation (please share more, Lynn!), Cynthia Taberner and her sister Deb, whose concerns and talking points were as succinct as their passion for the EDS cause, my husband, Craig Cleaveland, whose support made this all possible, and Barbara at Speaker of the House Robert de Leo’s Office, Constituent Services, and the many folks who listened to the challenges facing EDSers in MA.

Among the talking points were: Pain management, poor patient treatment in hospitals (due to lack of awareness/DSM V), the difficulties with insurance and genetic testing availability, and many others. Please know that the voices of EDS were heard; we hope this will lead to better treatment in MA for everyone!

Deep gratitude to everyone shown above who helped raise awareness!

Are you wondering what you can do with a proclamation in your own state? Jon Rodis has a few ideas:

People have asked me what are some ways to use the Proclamation to raise awareness and here are a few really good ones: 1) Talk with your state representative’s office staffer that represents where you live and send them a copy. Tell them some important things you would like them to know about how you are affected, physically and financially. 2) Give your doctors and medical providers a copy. Let them know that they can join the hundreds of medical providers who receive our Update emails! All they have to do is email me and ask to be added. 3) Call the Governor’s office and thank them for supporting us all and let them know the challenges you face. 4) Contact your local media, newspapers, etc and share the proclamation. Be sure to tell your story and highlight the key things you want everyone to know. They can contact me as well if they have any questions.