Profile

Cover photo
Ehlers-Danlos National Foundation
264 followers|38,923 views
AboutPostsPhotosYouTube

Stream

 
"There are a few experimental drugs that target the wasabi receptor, and the image lets researches see the cleft in the protein where the drugs bind. That will aid in the development of new drugs. The picture may also help researchers get to the bottom of basics mechanisms of pain." 
The structure will help researchers understand pain— and create drugs that could suppress it.
1
Mark Martino's profile photo
 
This NPR article includes a link to the full paper in "Nature" for those who are interested in reading more about the TRPA1 receptors. http://www.npr.org/blogs/health/2015/04/08/398065961/sushi-science-a-3-d-view-of-the-bodys-wasabi-receptor
Add a comment...
 
"Comments on the draft National Pain Strategy must be received no later than 5 p.m. on May 20th, 2015. This document includes objectives and plans related to key areas of pain and pain care, including professional education and training, public education and communication, service delivery and reimbursement, prevention and care, disparities, and population research."

http://iprcc.nih.gov/National_Pain_Strategy/Public_Comment_NPS_Draft.htm

The draft in PDF is available: http://iprcc.nih.gov/docs/DraftHHSNationalPainStrategy.pdf
DEPARTMENT OF HEALTH AND HUMAN SERVICES. National Institutes of Health. Solicitation of Written Comments on Draft National Pain Strategy. ACTION: Notice https://www.federalregister.gov/a/2015-07626. SUMMARY: The National Institute of Neurological Disorders and Stroke (NINDS) Office of Pain ...
1
Add a comment...
 
"'You know, it's that invisible nature of an illness that people don't understand,' says Wayne Connell, the founder and head of the Invisible Disabilities Association. …When a disability isn't immediately obvious, others — at work, school or even at home — sometimes doubt it exists and accuse those who suffer from invisible conditions of simply angling for special treatment." 
In employment disability discrimination charges filed between 2005 and 2010, the most commonly cited disabilities were those not immediately obvious to others.
4
3
Deborah Faulkner's profile photoEhlers Danlos Syndrome Family Contributions's profile photo
Add a comment...
 
The webinar from March 5, "Compression Supports for Pain Relief and Stability," is available on Bauerfeind's YouTube channel https://www.youtube.com/channel/UCibPw0e_x6fL2zHGKxv5SRA — and the 20% discount has been extended through April!
1
Add a comment...
 
Bauerfeind USA (http://www.bauerfeindusa.com/en/home.html) is offering a 20% discount off your order during March! Visit http://b2c.bauerfeindusa.com/ednf and use the discount code EDNF032015.
2
1
Zia Flower's profile photo
Add a comment...
Have them in circles
264 people
Margaret Foote's profile photo
Terri Mitchell's profile photo
Kat DeeCee's profile photo
Tracy LaForest's profile photo
Naomi Mumford's profile photo
Betty Whiteing's profile photo
Stephanie Sinclair's profile photo
Angela Giannini's profile photo
Jennifer King's profile photo
 
Have some beauty in your life; distract yourself, and visit the Rijkmuseum. Free online. https://www.rijksmuseum.nl/en/explore-the-collection
1
Add a comment...
 
Registration for EDNF's 2015 Learning Conference is now open! To register go directly to the registration site at http://bit.ly/EDNF2015Registration
1
Add a comment...
 
Diet & Supplement Guidelines for EDS (Heidi A. Collins)

Many persons with Ehlers-Danlos Syndrome (EDS) suffer moderate to severe (or even profound) gastrointestinal (GI) problems such as dysmotility, dysbiosis, and malabsorption, and significant malnutrition typically develops as a result. Additionally, many persons with EDS experience varying degrees of increased gut wall permeability or gut wall inflammation, and, as a result, many persons with EDS suffer secondary issues which may be remote to the gut, such as musculoskeletal pain, changes in bone density and mineraliza-tion, neurological or neuropsychological problems, focal or systemic inflammation, poor wound healing, and immune dysregulation, including autoimmune issues. The dietary inclusions/exclusions and nutritional supplementation guidelines in this document are generalized guidelines aimed specifically at supporting nutrition, maintaining normal gut bacterial balance, reducing increased gut permeability, and minimizing any symptoms attributable to gut inflammation or immune dysregulation, including abnormal mast cell activation. 

http://bit.ly/EDSnutrition
Dietary and nutritional supplement general guidelines for persons with Ehlers-Danlos syndrome, by Dr. Heidi A. Collins.
3
1
Ehlers Danlos Syndrome Family Contributions's profile photo
Add a comment...
 
"Happiness, knowledge, not in another place but this place, not for
another hour but this hour…" (Walt Whitman)
2
1
Lizzie Poulsen's profile photo
Add a comment...
 
Evenings with Genetics seminar sponsored by the Department of Molecular and Human Genetics at Baylor College of Medicine and Texas Children’s Hospital 

Tuesday, April 14, 2014 
Ehlers-Danlos Syndrome – Hypermobility Type: Keeping Active!

Dr. John Belmont, Pediatric Genetics, Texas Children’s Hospital
Dr. Carl Gelfius, Physical Medicine and Rehabilitation Department, Texas Children’s Hospital

          6:30 pm   Light Refreshments
7:00 - 8:15 pm  Seminar

Registration is required. Seminar attendance is FREE.
Please visit bcm.edu/eveninggenetics or call 832-822-4280.
1
Add a comment...
 
"New research shows that seven compounds of the countless found in spider venom block a key step in the body's ability to pass pain signals to the brain. The hunt for a medicine based on just one of these compounds, which would open up a new class of potent painkillers, is now a step closer according to new research published in the British Journal of Pharmacology." 
New research shows that seven compounds of the countless found in spider venom block a key step in the body's ability to pass pain signals to the brain.
4
2
Zia Flower's profile photoc. k. sandi's profile photo
Add a comment...
 
"It is in the darkest night that the light we are shines brightest.” (Matthew Stover) Thank you all for finding your way here, for helping light up our nights. I keep learning how to live a better life because of you.
3
4
Terrianne hodge's profile photoLizzie Poulsen's profile photo
Add a comment...
People
Have them in circles
264 people
Margaret Foote's profile photo
Terri Mitchell's profile photo
Kat DeeCee's profile photo
Tracy LaForest's profile photo
Naomi Mumford's profile photo
Betty Whiteing's profile photo
Stephanie Sinclair's profile photo
Angela Giannini's profile photo
Jennifer King's profile photo
Story
Tagline
Resources for those affected by Ehlers-Danlos syndrome
Introduction
Ehlers-Danlos National Foundation creates resources for those affected by the connective tissue disorder Ehlers-Danlos syndrome. Any medical information found here should be discussed with your doctors thoroughly before taking action. Established in 1985 by Founder Nancy Hanna Rogowski (1957 - 1995), we are a 501 (c) (3) Nonprofit Organization with thousands of members across America and around the world. Our volunteers and their families are the life blood of EDNF and make a huge difference to those affected by EDS.
Contact Information
Contact info
Phone
703-506-2892
Fax
703-506-3266
Address
7918 Jones Branch Drive Suite 300 McLean VA 2210