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Ehlers-Danlos National Foundation
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Please consider donating items to the 2015 Learning Conference Silent Auction—all proceeds will support the Foundation!
 
New this year! The Silent Auction will open at 5:00pm on Thursday as we kick off the Welcome Reception. Final bids will be placed by the end of the day on Friday and the winners will be posted on Saturday morning.
 
Please complete the EDNF Silent Auction Donation form (http://ednf.org/sites/default/files/EDNF_Silent_Auction_Form_0.pdf) and send your completed form to Kelsey Secules at ksecules@ednf.org no later than Monday, August 3rd.

We look forward to seeing you in August!

Planning on donating? All forms must be received no later than Monday August 3rd. To be listed as an EDNF Donor in the program, your Silent Auction Donation Form must be received by Friday, July 17th. This is also the deadline if you intend to ship your Auction Donations to the EDNF office ahead of time. Any items brought onsite must be delivered to the Registration Desk by 3:00pm on Thursday, August 13th. Please note: any items shipped directly to the hotel will result in a cost to the shipper. Avoid these costs by shipping your items directly to the EDNF office by Friday, July 17th.
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Comments on the proposed regulations are due this Friday, June 19, 2015. Tell the EEOC (https://www.federalregister.gov/articles/2015/04/20/2015-08827/amendments-to-regulations-under-the-americans-with-disabilities-act) not to permit employers to subject their disabled workers to a Hobson’s choice: Submit to the prescribed wellness activities, or pay hundreds more each year. The EEOC should instead insure that workers with disabilities can opt out of these programs without penalty.
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Meet Laura Backus, a triathlete with EDS (whom you may remember when we covered her participation in Ironman Florida in 2013), and one of the athletes featured in the movie, "It's Raining, So What." 
As the director of the film, I was so honored to have the opportunity to meet Laura Backus and gain an awareness and understanding of Ehlers-Danlos...
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"To invent your own life's meaning is not easy, but it's still allowed, and I think you'll be happier for the trouble." (Bill Watterson)
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The results are in! http://ednf.org/ehlersdanlosstories Thank you all for your wonderful entries. Both winners should get in touch with the EDNF office (http://www.ednf.org/contact-us).
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Don't delay! Last week of early registration for the 201 EDNF Learning Conference is here, available until June 9th.  Take advantage of this discount and register today http://bit.ly/EDNF2015Registration!

For more information about the conference, visit http://www.ednf.org/2015-learning-conference. Be sure to reserve your hotel rooms, too!
RATE TYPE. June 10 – August 5. Member. Non Member. Full Conference (16+). $374.00. $429.00. Friday One Day. $189.00. $214.00. Saturday One Day. $189.00. $214.00. Kids & Teens. $199.00. $199.00. RATE TYPE. ONSITE. Member. Non Member. Full Conference (16+). $449.00. $499.00. Friday One Day ...
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#EDSAwareness Are EDS progressive? Depends on whom you ask. Geneticists say it doesn't worsen, because—the mutation itself doesn't worsen, of course; the mutation(s) you're born with are assumed to remain the same across your life. But, living with what those mutations do to your body and systems accumulates over time, and those effects get worse. So, practically speaking, EDS are progressive.

One example: You aren't born with osteoarthritis from EDS—but the wear and tear on your joints means you develop OA, and it gets worse as time passes. 

Remember this? "Collagen is what the body uses to provide strength and elasticity to tissue; normal collagen is a strong protein that allows tissue to be stretched but not beyond its limit, and then safely returns it to normal. WIth a badly built or processed collagen, some of the tissue in your body can be pulled beyond normal limits, causing damage."

Every time a joint stretches too far, all the soft tissue attached to that joint gets injured, torn on an almost microscopic level; over and over again, several or many times a day, you initiate an inflammation/healing cascade. How often can that tissue undergo these traumas without undergoing structural or chemical changes? For a while, it's probably recoverable. After decades of this, though, you've set up a chronic inflammation that—even if you at some point stop stretching that tissue again through some miraculous process—might never reset and heal.

How often can you stress an organic system before it is irreparably damaged? How often can you stress multiple physiological systems before the integrity of the organism is compromised? How can EDS not be progressive as life continues?

Also, the symptoms that one's EDS causes change over the years, apart from getting worse or better; they don't necessarily stay the same over a life. For unknown reasons, and it seems often around major life hormonal events (such as transitioning between adolescence and adulthood, or menopause/andropause, etc.), EDS symptoms can rapidly alter, as one's systems change through these periods, and inherent weaknesses are revealed or lessened in impact. 
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EDS is not plural... O_o
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Have them in circles
279 people
Lizzie Poulsen's profile photo
Purl Beads Jo Southall's profile photo
Andrew McCluskey's profile photo
Stephanie McManus's profile photo
Jen Doyle's profile photo
Adriana Alburger's profile photo
Anthony Sclafani's profile photo
Melvin Menezes's profile photo
Cheri Parr's profile photo
 
"A partial loss of a protein called PPARy in a genetically modified mouse model led to increased bone formation. To see if they could mimic that effect using a drug candidate, the researchers combined a variety of structural biology approaches to rationally design a new compound that could repress the biological activity of PPARy…when human mesenchymal stem cells were treated with the new compound, there was a statistically significant increase in osteoblast formation, a cell type known to form bone." 
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This month, two prominent experts in the radiology community are calling for more research into possible health risks after three recent studies found that gadolinium, a potentially toxic metal, wound up in the brain tissue of MRI patients who used two different contrast agents. In the journal RADIOLOGY, Drs. Emanuel Kanal and Michael Tweedle said the studies “called into question” the “safety of at least some” of these agents. The two urged radiologists to change their prescribing habits, although not to stop using the drugs because of their proven benefits to patients. 

(There's a good article discussing the topic and what this means at https://www.propublica.org/article/left-in-the-brain-potentially-toxic-residue-from-mri-drugs)
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Rates go up in a couple of days! Take advantage of the early discount and register today http://bit.ly/EDNF2015Registration. For more information about the conference, visit http://www.ednf.org/2015-learning-conference. Be sure to reserve your hotel rooms, too!
RATE TYPE. June 10 – August 5. Member. Non Member. Full Conference (16+). $374.00. $429.00. Friday One Day. $189.00. $214.00. Saturday One Day. $189.00. $214.00. Kids & Teens. $199.00. $199.00. RATE TYPE. ONSITE. Member. Non Member. Full Conference (16+). $449.00. $499.00. Friday One Day ...
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"Vessels directly connecting brain, lymphatic system exist despite decades of doctrine that they don't; finding may have substantial implications for major neurological diseases; major gap in understanding of the human body revealed."

Kipnis J et al. "Structural and functional features of central nervous system lymphatic vessels." NATURE, published online June 1 2015. doi: 10.1038/nature14432 (See more at: http://www.nature.com/nature/journal/vaop/ncurrent/full/nature14432.html)
In a stunning discovery that overturns decades of textbook teaching, researchers at the University of Virginia School of Medicine have determined that the brain is directly connected to the immune system by vessels previously thought not to exist. The discovery could have profound implications for diseases from autism to Alzheimer's to multiple sclerosis.
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Lizzie Poulsen's profile photoBluemoon41997 bluemoon41997's profile photo
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#EDSAwareness Awareness Month is over, but our lives with EDS continue. Every day, struggles; every day, successes. Thank you for your attention this month and for bringing more people to knowledge. You may think it's impossible for you to change the world; but everything you do, every day, ripples out into the world. Thank you for your work.

“Big, important things are built from small and commonplace things, and even our little acts of petty, everyday good or evil have a cumulative effect on our world. Our smallest actions and choices matter.” (Jim Butcher)
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Amazing #Zebrastrong 🙏🏻🍀🌟⭐️💪
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People
Have them in circles
279 people
Lizzie Poulsen's profile photo
Purl Beads Jo Southall's profile photo
Andrew McCluskey's profile photo
Stephanie McManus's profile photo
Jen Doyle's profile photo
Adriana Alburger's profile photo
Anthony Sclafani's profile photo
Melvin Menezes's profile photo
Cheri Parr's profile photo
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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