Monthly Archives: May 2016

Summer Meetings!

The Rhode Island Ehlers Danlos Syndrome Awareness and Support group will be hosting a 3 year anniversary party on June 4th 2016 at 2pm at the Warwick Public Library located on Sandy Lane in Warwick RI.

Our next group meeting after that will be on July 30th with special guest speaker, Disability Attorney Mariam Lavoie. 



Awareness Event Happening This Weekend!


POTS WALK and 5K Race Medford, MA

May 7th, 2016  10am

RI Ehlers Danlos Syndrome Awareness and Support group will be joining many others this weekend to raise awareness for POTS and raise some money for Dysautonomia International. Already over 400 people have signed up to participate in the event. It should be a great day with lots of fun! RI EDS will have a table set up at the event and will be handing out free awareness materials. We would love to see you there!!

Join us this Saturday!

If you would like to donate, or register to walk/run –

Please share this with your friends and family!

Race Details and Schedule

POTS Walk and 5k Race takes place along the scenic Mystic River in Medford, MA.  The race will start and end at the Mystic River Bend Reservation located next to Hormel Stadium.  The race is accessible by T using the Wellington station or by car with plenty of free parking available. This race is sanctioned by USATF. Participants are welcome to join us after the race for entertainment and refreshments.  Proceeds from this event will benefit Dysautonomia International in the support of POTS research.


The registration fee is $30 per person.  Registration includes a free t-shirt and goody bag  for the first 500 registrants along with 6 free raffle tickets and post race refreshments and entertainment.  Additional raffle tickets may be purchased for $1 each on the day of the race.  Please register early.

If you are walking and would like to bring young children they are more than welcome.  They do not require registration and will not receive registration materials, bibs, or T-shirts.


Prizes will be presented to the top three men and women runners in the following age groups:  20 and under, 21-29, 30-39, 40-49, and 50 and over.

Event Schedule:

The race will start promptly at 10am.  Registration and bib pick-up will open at 8am and close at 9:30am.  Look for us under the windmill behind McGlynn Middle School.  Please plan to arrive early to pick up your bib.

A post race celebration including refreshments and entertainment will be provided until noon. 

Transportation and Parking:

The race course is accessible by T using the Wellington station.  A number of buses also service the area.  Plenty of free parking is available at Hormel Stadium.

Course Details and Safety

This race is sanctioned by USATF.  Runners are not permitted to have strollers, roller skates, skateboards, or bicycles on the race course.  Walkers may have strollers but will be asked to line up at the back of the field.

To make the course more accessible to POTS patients, we will be marking off a number of shorter distances along the race course.  Those that are unable to walk the entire course are encouraged to set their own goal and walk as much as they are physically able.  


This race will benefit Dysautonomia International an organization devoted to funding POTS research.  Please consider helping us fundraise by making a personal or team fundraising page.  Prizes will be rewarded to the top fundraising teams. Thank you!