Synovial Sarcoma - Online Support Group

Spot: Got Angioedema? Know about our Foot & Float?

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Opinion Health Market is a research agency based in London, UK. They work closely with several pharmaceutical companies helping them out to gather better knowledge and understanding of different treatment options for a variety of medical conditions.

Presently, they are working on a study to learn more about the challenges that patients diagnosed with Hereditary Angioedema (HAE) come across on a daily basis.

They would like to connect with parents who have children age 12 – 17 years suffering from HAE and receiving topical treatment and have asked Ben’s friends to help get the word out.

The study involves a simple 90 min telephone conversation with a parent and a child that would be scheduled at the time convenient for them. As a way of thank you each participant who successfully completes the study will be reimbursed with a voucher of 180 USD.

Study is strictly confidential and all answers provided during the interview as well as personal details of participants with not be passed on to the third party; results will be used for research purposes only.

Update on Foot and Float fundraiser to build 10 new Bens friends Communities:

As of this morning, we are nearly one-third of the way to our goal with almost 2 months to go! Thanks to all who have participated and shared this event through their Social Networks.

Some interesting facts about the Foot and Float team:

Between the ten members on the Team in addition to Their Primary Diagnoses of AVM, Cancer, Psoriatic Arthritis, Congestive Heart Failure, Lupus, Fibromyalgia, Extreme Sleep Disorders, Ehrler Danlos, Idiopathic Seronegative Spondylopathy, Acalculous gallbladder disease, and Ankylosing Spondylitis, also can lay claim to:

  • Combined age: 520 (oldest 75, youngest 12)

  • Cancer Survivors: 3

  • Stroke Survivors: 2

  • Joint replacements (so far): 9

  • Spinal Injuries: 2

  • Total Surgeries: 83
    More importantly

  • Bad attitudes and depression helped and the ability to self advocate help by Ben’s Friends: 10
    This team is dedicated to hike/paddle 500 miles over 5 days in August to raise enough money to start 10 new BF communities. If you haven’t shared our fundraiser and story with your networks yet, could you? Would you? Not only will it help reach our financial goal but raise awareness of Ben’s Friends and Rare disease:

gofundme.com

Click here to support Foot and Float to Build 10 New Communities organized by…

Want to join us in making a difference? 10 Ben’s Friends Members and Friends spanning 3 generations are traveling to Glacier National Park This August for five active days to prove rare Disease Can’t stop - us not on Land or on Water and to raise…