Dear Friends and Family of UnitedWithDisabilities,

We are so excited we cannot wait to tell you about how our organization is growing, so we’ll go straight at it. We are please to tell you that collectively our patient communities have reached four consecutive monthly peaks in all aspects of our activities, overshooting even the targets we have set ourselves two months ahead!

Here are some highlights:

Total members for all communities…

Trabasack Launches Innovative New Media Mount

When Sickness Strikes the Family–

Children are the most affected when sickness hits the family,…

Do you have a story to share on the following topic? If so, send an email to Patrick Hester by clicking on the link below.

Summary: Are You Wondering How to Get The Most Out of Your Health Screening? 

Email to: query-23di@helpareporter.net 

Media…

Dear Friends and Family of UnitedWithDisabilities,

April – the smell of spring in the air!

Spring brings a lot of positive notes: it signals growth and rebirth. As Ben’s Friends, our patient support group is growing real fast. As a member community, you’ll see stats on how we contributed to this growth as reported below. Be assured that no matter how small the contribution may be, it adds up and it is very much appreciated!

Our presence is being…

In the  midst of the buzz about Rare Disease Day throughout February, I came across JC Colyer on Twitter. He has been diagnosed with Ataxia.  Curious to learn about this rare condition, I asked him if he would like to talk about Ataxia so that we can learn about it. Graciously, he agreed to contribute the post below.  Not only did he provide details about Ataxia, but he provided a key ingredient to coping with any major challenges in life: adapting your lifestyle!  Thank you,…

A member from a fellow community asked: What to do when depression sets in? You can almost imagine the outpouring of support from everyone.

It dawned on me: What advise can we offer a family faced with a rare disease? The challenge of caring for rare disease patients in the family can be a daunting one.

I found that the issue is manifold. I…

Dear Friends and Family of UnitedWithDisabilities,

February brought us great strides as our various communities of rare disease support groups gathered the largest number of new memberships of all time! The volume of blog posts, comments and discussions also increased. We at Ben’s Friends commend you all for your active support of our communities!

IN THIS …

Dear Friends and Family of UnitedWithDisabilities,

As you well know, living with disability can be very challenging not only for you but to your families as well. This organization was built with a view to helping you and your families to live up to this challenge by linking you up with people who share similar experiences and have succeeded in maintaining a positive outlook!

Explore more how our community had helped members…

I’m the co-founder of this site and help run a group called Ben’s Friends (www.BensFriends.org) that builds patient support networks for people with rare conditions. I do this cause I love it. I’ve met so many wonderful friends on this journey.

It all started when my buddy, Ben Munoz, had a stroke caused by a rare condition called AVM. Ben survived but during recovery he couldn’t find a support group…so he started one called…

If you are within driving distance to Mount Washington Valley in North Conway, you are in for a real treat next weekend. Paradox Sports, a non-profit organization based in Colorado, is initiating ice events that are especially designed for people with disabilities. The event will run from February 10 to 12, and will feature local ice routes which are the area’s main attractions. Participants, regardless of disability are free to join as Paradox is manned by volunteers who are specifically…

Disabilities Members, Friends and Family,

As we begin a brand new year, envigorated with greater joy and compassion, we renewed our greater commitments to our community. BensFriends grew tremendously in the past three years, and we want to take this moment both to thank you and to make a promise to continue fulfill our mission: to ensure that everyone in the world with a rare disease has a safe place to go and connect with others like them.

We’re truly…

Sarah is setting a course for Canada.

Please follow the blog, and welcome her on her landing in Canada

http://www.sarahouten.com/on-the-edge-of-the-ocean/?utm_medium=twitter&utm_source=twitterfeed

Born without his right lower leg and with only five good fingers to grasp with, Jordan Baker will seem to others that he has a disadvantage as a wrestler. But for Jordan, it’s a welcomed challenge.

The 16-year old out of Duluth, MN starts wrestling matches with his right knee and hands on the floor. He compensates for the difficult position with his incredibly strong upper body and refined techniques.  Jordan is just stronger than everyone else and he is relentless with his attacks,…

UnitedWithDisabilities Members, Friends and Family,

We hope this message finds you well with high spirits and inner joy. We’re happy to inform you that our UnitedWithDisabilities community continuously been growing. And as always, we’re here to give strength and support.

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IN THIS…

NAMI New Jersey is delighted to announce that on Saturday, May 12, 2012, affiliates, members, partners and supporters from the Skylands to the Jersey Shore will have an opportunity to “Step Forward for Our Heroes” by walking in support of the mental health…

On February 28th which was Rare Disease Day and I got up in front of 500 people and gave this speech, hope it will open your eyes 

I am the strength behind ataxia

Spinocerebellar Ataxia is a degenerative condition that affects the cerebellum. The main job of the cerebellum is to coordinate the body’s ability to move. Ataxia is a Greek word that means lack of order, and medically it indicates lack of coordination. Ataxia leads to a progressive atrophy of the…