Loose Connections The Official Communications Link of the Ehlers-Danlos National Foundation
Loose Connections is the quarterly newsletter that is published by the EDNF. It provides current information on medical advances in EDS, updates the membership on the activities of the Foundation and delivers an insight into life with EDS.
Loose Connections is an important vehicle for getting information out, not just to our members, but to the medical community as well. Members photocopy articles to share with their physicians and therapists. Not everybody has access to the internet and this well respected and established publication is seen as one of the major benefits of belonging to the EDNF.
If you would like to find out more about Loose Connections and membership in Ehlers-Danlos National Foundation, please see Why join the EDNF? This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
Loose Connections - Summer 2005
"Stop Romancing the Past and Embrace the Future: A Report on the Inaugural Meeting of the Regional Coordinators"; "Announcing the EDNF Medical Reference Guide"; "Change is Challenging; My Two Cents"; "You Never Know Who You Might Meet". Download Issue
Loose Connections - Fall 2005
"Medical Reference Guide Now Available"; Conference 2005: Different, Challenging, Positive"; Conference Awards, Thank Yous, Photos; "Say Hello and Wave Goodbye". Download Issue
Loose Connections - Winter 2005
"2005 Gift of Awareness: EDNF Wallet Card"; "Conquering Mount Whitney and EDS Too!" by Josh Rosenheck; New Gor-Tex Stent for Graft: Repair Delivers Good Results by Mark LaVallee, MD; EDNF Announces 2005 Research Grants Download Issue
Loose Connections - Spring 2004
EDNF & National Organization for Rare Disorders (NORD) Announce Research Seed Money Grants for EDS; 2004 Membership Services; Educating & Fundraising with Local Groups; Dissemination of Accurate Information from EDNF; "Women in Pain: Trends and Implications of Underdiagnosis of Chronic Pain in Female Patients". Download Issue
Loose Connections - Winter 2003
"Prevalence Of Aortic Root Dilation in the Ehlers-Danlos Syndromes" by Richard Westrup, MD, Richard A Meyer, MD, Jenny Lyle, Leah Hoechstetter, MS, Peter S. Rose, Howard Levy, MD and Claire Francomano, MD; EDNF Learning Conference 2002; EDNF Learning Conference Thank You; Conference 2003 - The Reunion; EDS Sabel Foundation. Download Issue
Loose Connections - Summer 2002
EDNF & www.ednf.org; ER CD-Rom tracking; General Discussions. Download Issue
Loose Connections - Spring 2002
EDNF Announces Release of EDS Emergency Physicians Reference Guide on CD Rom; 2002 Membership Survey; 2002 Learn Conference Schedule; "Yes .. You Really Can Make a Difference!" by David Specht. Download Issue
Loose Connections - January 2002
"A Recessive Form of EDS Caused by Tenascin-X"; Local Branch News; "What You Can Do: How to Get from Hurt to Hope" by Audrey Kron, M.A., CGP; 2001 Read-A-Thon for EDS Research; 12th Annual Learning Conference Information. Download Issue
Loose Connection - Summer 2001
"NIH Pilot Study Finds Mindfulness-Based Stress Reduction (MBSR) Helpful for Persons with EDS and Chronic Pain" by Trish Magyari; Supporting Research on EDS; Branch News, EDNF Read-A-Thon; AMVETS Auxiliary Fund Raiser. Download Issue
Loose Connections - Fall 2001
"What to do When Your Child Can't Sleep" by Mary Anne Dankin; "Emergency Preparedness for People With Disabilities" compiled by Linda Neumann-Potash. Download Issue
Loose Connections - Spring 2001
"Ninety Years of Living with Ehlers-Danlos" by Lucille L Williams; "Family Resource Guide for Ehlers Danlos". Download Issue
Loose Connections - Nov./Dec. 2000
"Clinical and Genetic Features of Ehlers-Danlos Syndrome Type IV, The 
Vascular Type" by Melanie Pepin, MS, Ulrike Schwarze, MD, Andrea Superti-Furga, MD and Peter Byers, MD; Podiatry Update; 2001 Learning/Clinical Conference; Living with the vascular form of EDS; "A New Life with EDS" by Jennifer Civolo-Carson; Glossary of EDS Terms. Download Issue
Loose Connections - Sept./Oct. 2000
"Headaches in Ehlers-Danlos Syndrome" by DE Jacome and
Loose Connections - Feb/Mar 2000
"Joint Surgery in Ehlers-Danlos Patients: Results of A Survey" by Jacob Weinberg, MD, Christopher Doering, MD and Edward McFarland, MD; The History of EDS; EDNF Behind The Scenes; Research Announcement from Johns Hopkins University. Download Issue
Loose Connections - Nov./Dec. 1999
"Banbury Conference Report" by Peter Tsipouras, MD and Richard Wenstrup, MD; EDNF Behind The Scenes; 1998 Financial Report; Youth Forum. Download Issue
Loose Connections - August 1999
"The Emergency Room and Ehlers-Danlos Syndrome" by Tina M. H. Blair, MD, FACEP;
Loose Connections - May 1999
Meg Harmon"s Testimony Before the Subcommittee of the Labor, Health and Human Services and Education of the House Of Representatives Committee on Appropriations; 1999 Philadelphia Learning Conference; "EDS and Water Resistance Exercise" by Katie Schmidt. Download Issue
Loose Connections - February 1999
"Podiatric Medical Approach to the Management of Lower Extremity Complications of EDS" by Patrick Agnew, DPM; Kids Discover Fun and Friendship at the American Academy of Dermatology"s Camp Discovery; Conference Scholarship Fund; 9th EDNF Learning/Clinical Conference. Download Issue
Loose Connections - November 1998
"Ehlers-Danlos Syndromes: The Role of Collagen in the Eye"; Looking to the future: The Strategic Plan of the EDNF: Many modes of fundraising for EDNF. Download Issue
Loose Connections - August 1998
"Ehlers-Danlos Syndromes: Revised Nosology, Villefranche, 1997"; Fundraising Plans to Help Branches; 1997 Financial Report. Download Issue
Loose Connections - May 1998
"Genetics and Inheritance Patterns in Ehlers-Danlos Syndrome" by Darlene Clark, RN, MSN, Karen Shrocki Czerpak, RN and Linda Neumann-Potash, RN, MN; The Executive Element; 1998 Learning Conference in Tampa details. Download Issue
Loose Connections - February 1998
"The Revised Ehlers-Danlos Syndrome Nosology"; EDS in NIH Research Project;
Loose Connections - November 1997
"Chronic Pain is a Manifestation of Ehlers-Danlos Syndrome"; "Learning to Manage Fibromyalgia Syndrome" by Darlene Clarke; Guidelines to help select a pain unit. Download Issue
Loose Connections - August 1997
"Managed Care - A Basic Map for Navigating Your Insurance" by Karen Skreckl Czerpak, R.N.; "Nosology Meeting In Villefranche"; "Gene Therapy - Can It Work?" ; 1998 Learning Conference. Download Issue
Loose Connections - May 1997
"The Role of the Rheumatologist in Ehlers-Danlos Syndrome" by Alan W. Weinberger, MD; "Progress in Research on Ehlers-Danlos Syndrome" by Harold Goldstein; Action Leads to Results; 1996 Financial Report. Download Issue
Loose Connections - February 1997
"Ergonomics: Controlling Risk Factors and Potential Stressors" by Mary Brutman, MPA; Pen Pal Program, "Why EDS" by Valerie Burrows. Download Issue
Loose Connections
"Ergonomics: Recognition and Evaluation of Risk Factors and Potential Stressors - Part 2" by Meryl Brutman; Introduction of Linda Neumann-Potash as the new Executive Director; Medical History Form Template; ""Joint Surgery in EDS Patients: Preliminary Results of a Survey" from the Section of Sports Medicine & Shoulder Surgery Johns Hopkins University of Orthopedic Surgery. Download Issue
Loose Connections - August 1996
"Ergonomics: Recognition and Evaluation of Risk Factors and Potential Stressors - Part 1" by Meryl Brutman; "Coping with EDS"; "Shriners Hospital Tampa Hosts EDS Learning Day" ; The birth of The Nancy Hanna Rogowski Memorial Database; Manuscript Guidelines for Loose Connections. Download Issue
Loose Connections - May 1996
"The Medical Partnership, How to Work as a Team With Your Doctor" by April Linette Leaman, a medical student at