2015 School Nurse Conference Awareness Event

schoolnursetable2 schoolnursexan

We had a wonderful time today at the School Nurse Conference. Thanks to everyone who came out. Special thanks to Ginny Law​ for getting us the opportunity and working tirelessly to get us even more opportunities for community outreach! Thanks also to Krista Brack, Xantha McCartney​, Jen Corneau​ and Christine Morphis​ for volunteering their time and resources to make this event so successful. It was an amazing event. They were very happy to have us and will let us know in the future of other opportunities for us to raise awareness! If anyone else has pictures we would love to see them!

Some resources provided to us for free from the Marfan Foundation and Healy Physical Therapy and Sports Medicine, Inc. We thank them both for their continued support!!

Other materials printed/provided by the Rhode Island Ehlers Danlos Awareness and Support group with assistance from Ehlers Danlos Syndrome Network C.a.r.e.s. , Inc., EDS Today, and the Ehlers Danlos National Foundation.

If you would like to help us continue to reach more people with our community outreach efforts we need help with our printing costs! If you would like to help us with the printing costs and other group activities there is a donate button to the right of the main page on our website (www.rieds.org). If you would like to donate by check or some other way such as office supply gift cards please contact Krista – krista@rieds.org. Currently all of our costs are paid for directly by our members, most of whom are too ill to work but give what they can to keep our efforts going, we could use your help!

http://www.marfan.org/

http://www.healyphysicaltherapy.com/

http://www.ehlersdanlosnetwork.org/

http://edstoday.org/

http://www.ednf.org/

Next Meeting and upcoming events

May15Flyer2

May 30th RI EDS Awareness and Support Group Meeting 2pm-4pm – Warwick Public Library Large Meeting Room 600 Sandy Lane Warwick, RI 02886. We will have an update on our May events; we would love to hear from you about what you did this May to raise awareness. We will also be discussing the summer conference season and will have a guest speaker who will be doing a workshop on using Essential Oils.

June 7th Joint Meeting of the Ehlers-Danlos New England/Massachusetts Support Group and the Massachusetts Chapter of the Marfan Foundation at Children’s Hospital in Waltham, MA from 1 PM to 5 PM.  Contact Jon Rodis for more information. Jon’s new email – wsalmgcdjm@comcast.net

June 27th RI EDS Awareness and Support Group Meeting 2pm-4pm – Warwick Public Library Large Meeting Room 600 Sandy Lane Warwick, RI 02886. Details to follow.

September 12th RI EDS Awareness and Support Group Meeting 2pm-4pm – Warwick Public Library SMALL Meeting Room 600 Sandy Lane Warwick, RI 02886. September is Pain Awareness Month, it is also Chiari Awareness month!

September 19th –US Pain Foundation Pain Awareness Event at Miriam. Details to follow!

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

Come join us today at the Marfan Foundation’s Walk For Victory!

We will be joining the Marfan Foundation and the New England EDS group in this years Walk for Victory! I’ll be there around 11:30 wearing my EDS shirts and carrying a banner for the RI group, I should be easy to spot 😉 Here is the information that is up on the website for anyone looking to join us:

Location

Salem Willows Park
167 Fort Avenue
Salem, Massachusetts

Registration & Check-in: 12:00 pm

Walk Start: 12:30 pm
Join us for our 2nd Annual Walk for Victory and help us raise awareness and advance our life-saving work. Grab a friend, join a team, or make your own team and get ready for some fun in the sun! Enjoy a mile-long leisurely walk with other affected families and friends and then celebrate with some snacks, music, and games!

Benefits for Walkers:
– Your own personal or team fundraising webpage
– Snacks, games, and DJ entertainment
– The chance to connect with others in your community
– Satisfaction in knowing that you are helping to save lives and improve the quality of life for the many thousands of individuals and families affected with Marfan syndrome and related disorders.

Additional Details:
– Your registration fee covers your entry fee into the walk and all food and activities
– Every walker that raises at least $100 will get an exclusive Walk for Victory t-shirt
– There will be prizes for Top Fundraisers

REGISTER TODAY!

Early Bird Registration (through April 14) – FREE

Standard Registration (April 15 – May 15) – $10 per person

Walk Day Registration (May 16) – $20 per person

http://www.firstgiving.com/marfan/2015WFV-Mass

 

Awareness Event Opportunity

Miriam Hospital Awareness Event: A full week of awareness 8am to 5pm daily. We need you to help out! Sign up to be a volunteer by emailing Krista – Krista@rieds.org or you can also sign up on our Facebook page in the events area, please note what time slot you will be filling in for.

Starts: Monday May 4th 2015

Ends: May 8th 2015

We will have a table set up directly outside of the cafeteria on the first floor of Miriam Hospital.

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. We are looking for people to man the table a few hours a day; we are looking for people who want to help that have been affected by EDS (yourself, friend or family member). You don’t need to be overly knowledgeable about EDS to participate, We will have all the information to provide. The most important thing is to be non-confrontational, be pleasant, we want to be remembered well and invited back again next year. That doesn’t mean you can’t disagree, we had some wonderful discussions happening last year and everyone was great. Be pleasant, friendly and neat, those are the only responsibilities involved! It will be fun to get out and raise awareness for EDS, connective tissue disorders and related conditions, and maybe make a new friend while you are at it.

AS OF NOW WE NEED VOLUNTEERS FOR EVERY DAY.

MONDAY – no one signed up for 8am to 3pm. I will be here in the morning, looking for company

TUESDAY – 8-10 and 2:30-5pm no one signed up, I could use at least 1 more at 12-2:30

WEDNSDAY – 8-10 and 12-2:30 need 1 or 2 more people, no one signed up for 10-12, 2:30-5

THURSDAY – No one signed up for the 8-10 or 2:30-5, need 1 or 2 more at 12-2:30

FRIDAY – 1 or 2 in the morning, no one has signed up for the 12-3

IF YOU SIGNED UP ON FACEBOOK PLEASE CONFIRM THAT YOU WILL BE THERE AND NOTE AT WHAT TIME

TIME FRAMES ARE SUGGESTIONS ONLY, IF YOU WOULD LIKE TO COME AT A DIFFERENT TIME PLEASE LET ME KNOW! Also if you can only come for an hour or would like to be available in case someone can’t make their time please let me know, email krista@rieds.org

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

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

Upcoming Events

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

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