Monthly Archives: March 2015

Meeting this weekend!

Hello everyone, Hope you are all doing well. The next meeting for the Rhode Island Ehlers Danlos Syndrome awareness and support group will be this Saturday March 14th at 2pm, at the Warwick Public Library. Please share this with anyone you think will be interested/could benefit from this meeting. We are a support group for those with all types of Ehlers Danlos Syndrome/connective tissue disorders and their caregivers, family and friends.

 

NEXT MEETING:

Saturday  March 14th 2pm – 4:30pm

Warwick Public Library

Small Meeting Room

600 Sandy Lane Warwick, RI

 

In March we are very lucky to have Joanne Leppanen from RIPAC, The Rhode Island Patient Advocacy Coalition, as a guest speaker. Rhode Island Patient Advocacy Coalition (RIPAC) is Rhode Island’s non-profit grassroots medical marijuana community. 

 

Joanne will be talking about the cannabis program here in RI,  she will go over the caregiver program and talk about what RIPAC has to offer new and existing patients. If you would like to check them out before the meeting, or you are an existing patient looking to set up a new patient orientation the website can be found here – http://ripatients.org/ the office is located at 498 Kinsley Avenue, Providence, RI 02909 and the phone number is 401-861-1601

 

We will also have time for questions and socializing. Please join us, even if you have no interest in this meetings topic, come connect to some of our wonderful members, make a new friend and learn about something new. Hope to see you there! I have a wedding to attend directly following this meeting so I won’t be able to stay longer, I will be there at 1:30pm for anyone who has questions and wants to come early.

 

If you aren’t able to make this meeting, I hope you can come to one in the future!

 

April 18th RI EDS Awareness and Support Group Meeting 2pm-4pm – Warwick Public Library Large Meeting Room 600 Sandy Lane Warwick, RI 02886. Special Guest Speaker – A nurse from Blue Cross is coming to speak to us about the best ways to advocate for ourselves and to get the best care we can, please email any questions you have for the nurse to krista@rieds.org. We will also have an update on May events at the end of this meeting

April 19th The ‘Joint Get Together’ of the EDSNE/MA Support Group and the Massachusetts Chapter of the Marfan Foundation is April 19th at Children’s Hospital in Waltham, MA from 1 PM to 5 PM.  –Rescheduled – This was originally in February but poor weather made it impossible, this is the NEW date. 

May 30thRI EDS Awareness and Support Group Meeting 2pm-4pm – Warwick Public Library Large Meeting Room 600 Sandy Lane Warwick, RI 02886. Details to follow!

Miriam May Awareness Event

Take part in our 2nd annual EDS Awareness Event at Miriam! May 4th-May 8thMiriam Hospital is allowing us to set up a table in the hallway for five days in May. The dates are May 4th– May 8th from 8am to 5pm. We will have a table with our Proclamation displayed as well as a couple of small posters with EDS information, information to hand out like the EDNF brochures and others that I bring to the meetings. You don’t need to be overly knowledgeable about EDS, we just need people who want to help that have been affected by EDS (yourself, friend or family member) We will have all the information to provide. It will be fun to get out and raise awareness for EDS and related conditions, and maybe make a new friend while you are at it. Sign up on the Facebook page or email Krista – Krista@rieds.org to join the list of volunteers!

Upcoming Conferences:

June 25th -27th –CEDSA (Center for Ehlers-Danlos Syndrome Alliance) Conference-Romulus, MI https://cedsa.org/cedsa-info/matrix-of-ehlers-danlos-syndrome-conference-2015.html

 August 6th–9th– The Marfan Foundation Conference-Chicago, IL http://www.marfan.org/resources/patients/conference

August 13th-15t– EDNF Conference-Baltimore, MD http://ednf.org/annual-conference

September 26th – Marfan Foundation New England Symposium – Manchester, NH

 

Krista Brack

Krista@rieds.org

www.rieds.org

RI EDS Awareness and Support Group

Facebooktwittergoogle_plusredditpinterestlinkedinmail

Here is what is happening with the RI Support group till May

Mar15Flyer

March 14thRI EDS Awareness and Support Group Meeting 2pm-4pm – Warwick Public Library SMALL Meeting Room 600 Sandy Lane Warwick, RI 02886 – In March we are very lucky to have Joanne from RIPAC, The Rhode Island Patient Advocacy Coalition, as a guest speaker. I’ve had many questions about using Cannabis and the patient program in Rhode Island so I hope we have a good turnout for this meeting. Joanne will be talking about the cannabis program here in RI, how the law works, she will go over the caregiver program and talk about what RIPAC has to offer new and existing patients. If you would like to check them out before the meeting, or you are an existing patient looking to set up a new patient orientation the website can be found here – http://ripatients.org/ the office is located at 498 Kinsley Avenue, Providence, RI 02909 and the phone number – phone: 401-861-1601

April 18th RI EDS Awareness and Support Group Meeting 2pm-4pm – Warwick Public Library Large Meeting Room 600 Sandy Lane Warwick, RI 02886. Special Guest Speaker – A nurse from Blue Cross is coming to speak to us about the best ways to advocate for ourselves and to get the best care we can, please email any questions you have for the nurse to krista@rieds.org. We will also have an update on May events at the end of this meeting

May 30th RI EDS Awareness and Support Group Meeting 2pm-4pm – Warwick Public Library Large Meeting Room 600 Sandy Lane Warwick, RI 02886. Details to follow!

Miriam May Awareness Event

Take part in our 2nd annual EDS Awareness Event at Miriam! May 4th-May 8th Miriam Hospital is allowing us to set up a table in the hallway for five days in May. The dates are May 4th– May 8th from 8am to 5pm. We will have a table with our Proclamation displayed as well as a couple of small posters with EDS information, information to hand out like the EDNF brochures and others that I bring to the meetings. You don’t need to be overly knowledgeable about EDS, we just need people who want to help that have been affected by EDS (yourself, friend or family member) We will have all the information to provide. It will be fun to get out and raise awareness for EDS and related conditions, and maybe make a new friend while you are at it. Sign up on the Facebook page or email Krista – Krista@rieds.org to join the list of volunteers!

We will be booking meetings this summer and are considering having one on a weekday, if this interests you and you have a day in mind email me – krista@rieds.org We are also thinking about doing a summer cookout/fundraiser – I am looking for volunteers and ideas!

Upcoming Conferences:

 June 25th -27th –CEDSA (Center for Ehlers-Danlos Syndrome Alliance) Conference-Romulus, MI https://cedsa.org/cedsa-info/matrix-of-ehlers-danlos-syndrome-conference-2015.html

 August 6th–9th– The Marfan Foundation Conference-Chicago, IL http://www.marfan.org/resources/patients/conference

August 13th-15t– EDNF Conference-Baltimore, MD http://ednf.org/annual-conference

September 26th – Marfan Foundation New England Symposium – Manchester, NH

Exciting news from our friends at The Coalition Against Pediatric Pain! Here at last: Family Summer Camp for Pediatric Pain Patients — Free of Charge!!! The Coalition Against Pediatric Pain (TCAPP), RSDSA, and the US Pain Foundation have partnered with The Center for Courageous Kids in Kentucky and have pooled all of our resources to create a camp for kids in pain. This will be a family camp that will take place at The Center for Courageous Kids in Scottsville, Kentucky from July 14-17th and is free of charge. It will be a time for families and kids that deal with daily pain to kick up their heels and have fun in a safe, accepting environment! For more about this and other things TCAPP is up to – www.TCAPP.org

Facebooktwittergoogle_plusredditpinterestlinkedinmail