9/18/2017 think with your head - listen with your heart

Anything worthwhile takes time, effort and sacrifice, I slightly recall my father saying to me as a young boy.  No different really then navigating through life when a loved one has a rare disease.  So many people set up boundaries things that "cannot" be done.  Never let anyone judge what your child is capable of achieving.  It's hard with all the medical advice carrying over on a day to day basis.  But don't doubt your child has a voice, can be heard and should be heard!


6/5/2017 Smaller World

You know our gig, attempting to bring the rare disease community together any way we can.  Since February we have made three educational presentations at local schools and colleges.  As you may or may not know, Vermont Rare is a sponsor of the Vermont Overland Gravel Bike Team for that very reason, spreading the word, sparking conversation.  VT Rare also sponsors the RAS Gravel Adventure Ride coming up on June 24th, https://www.bikereg.com/ras-adventure-ride--10krun-run

This weekend while riding another great gravel event in Brattleboro standing true to our word of "sparking conversation" and in need of a good coffee, I decided to head into town and visit a few local bike shops.  Upon doing so I ran into Burrows Sports on Main Street.  I was completely taken back by the friendly women behind the counter who after getting into conversation about my RAS Gravel Ride, come to find out, we had a lot in common.  So much that by the end of the conversation we were both welling up with tears and I wanted to reach over the counter and hug the women.  Just knowing that someone else feels your pain, knows there is always hope, stay strong Julia for yourself and your family.  I can see your an amazing mom and knows there are other out there standing beside you.  Thanks for sharing!




5/12/17 Connection

Vermont Rare, we are an organization that cares deeply about creating a community in Vermont and beyond for those living with and affected by rare disease.  We intimately know the challenges of the rare disease journey.  As passionate cyclists, we also know that there are parallels that exist between cycling and walking the rare disease path.  

4/14/17 Springtime

April brings Easter, Passover, a changing of the season, growth, rebirth if you will.  For those out there with a rare disease it seems as though this sometimes could take forever to happen.  Gain strength or in many cases weight, confidence, reduced need for medical devices, brighter than darker days or assurance that all will be OK.  Have faith in your path, in what you believe, try everything until something helps and never give in or give up!  So much progress can be made by remaining positive with your outlook, staying commitment to your goals and working hard.  

Happy Spring!


4/7/17 Rare Disease Assessment

A rare disease assessment form in the making.  Here at Vermont Rare, we're trying to gather information regarding rare disease in New England.  Please fill out and share if you or know of someone with a rare disease.  Remember, a condition is considered "rare" if it affects fewer than 200,000 persons.   





3/28/17 Hippotherapy day in VT


The term hippotherapy refers to how occupational therapy, physical therapy, and speech-language pathology professionals use evidence-based practice and clinical reasoning in the purposeful manipulation of equine movement to engage sensory, neuromotor, and cognitive systems to achieve functional outcomes. In conjunction with the affordances of the equine environment and other treatment strategies, hippotherapy is part of a patient's integrated plan of care.

Shane has been taking to riding Fred at only his third session.  There are several maneuvers the therapists help him through while he is riding his new friend, "Fred the Horse" at http://highhorses.org/ in Norwich, Vermont.  Not only does Shane seem to be enhancing his social, physical, cognitive behavioral skills but also we have seen first hand improvement in his posture as well as flexibility when he is finished with his riding session.  

Equine Assisted Activities and Therapies are recognized by:

American Physical Therapy Association, American Occupational Therapy Association, Easter Seals, Muscular Dystrophy Association, Multiple Sclerosis Society, Special Olympics, Spina Bifida Association, United Cerebral Palsy.

For other rare disease disorders that affect development, hippo therapy could indeed help.  

A special thanks goes to Shane's Aunt Liz and Uncle Pat for being so good at playing music!



3/8/17 KMS Day

Vermont Rare started off Rare disease week with a bang as I was in DC for Lobby Day on the 1st and Marybeth was here in Vermont visiting the student body at https://www.killingtonmountainschool.org/ discussing the hows and whys of rare disease.  She is a born teacher, better than I, keeping the group engaged, asking questions and keeping their curiosity high for her second visit on March 8th.  There we reviewed my trip to DC and continuing speaking to rare disease with some facts and things to think about, trying to make rare disease not so rare.  


Rare Disease Day 2017

So happy to be here in DC for the Rare Disease Conference and get a chance to lobby with lawmakers tomorrow on Capitol Hill. What an opportunity to meet people, network, share idea and get a whole new education. Even after being here only one day, I can see this being an annual stop on our tour of educating, advocacy and supporting families who cope with some form of rare disease. 

There are 7,000 rare diseases which affects more than 350,000,000 worldwide and 95% of them still have no treatment. Staggering statistics, so we'll continue to spark conversation and try to make them not so rare.