It is with great personal sadness that I wish to let this SCLS community know of the death this past Friday morning (11/27/09) in Baltimore, Maryland, of Judith Lynne (Judy) Davis, 51 years old, as a result of complications following an extraordinarily severe episode of SCLS. She passed away comforted and surrounded by family and friends, including her wonderful husband Richard and her two loving sons, who had planned to spend the Thanksgiving holiday with their parents. Judy had been a highly regarded and compassionate pediatric nurse at the top-ranked Johns Hopkins Hospital in Baltimore, and she had been coping valiantly with her chronic SCLS since it was diagnosed in late 2004. To my knowledge, Judy was the first SCLS patient in the United States who waived her rights to medical privacy and actively sought out to meet, exchange information with, and comfort other patients with this exceedingly rare disease. For this purpose, she would write, call and visit whoever else accepted her friendship, and this is how I came to know Judy in 2006 – when I too decided to go in search of other patients with SCLS, and was put in touch with her by Dr. Philip Greipp of the Mayo Clinic. Since that time, my wife and I have spoken with and met in person with Judy and Richard countless times, whether in New York, Baltimore or Washington, DC. However, Judy and I went through an emotionally very tough time in late 2007-early 2008, when we learned of the death (from SCLS-related complications) of the only three other patients we knew or had heard about: the late Marianne, Russell and Glenn from Cincinnati, upstate New York and North Carolina, respectively. We felt as lonely as if we were the last two SCLS patients left on this planet, and no matter how much we tried to comfort one another, we knew that to bolster our emotional sanity, we had to find a way to get in touch with other survivors of SCLS. They probably also felt just like we did, leading lonely lives struggling with this rare and frequently misdiagnosed illness. And, sure enough, a ray of hope opened up in May 2008, when I got an email message inviting me to explore the newly launched _www.rareshare.org_ site, which I did. That same day I seized the opportunity and set up this SCLS virtual community site, but for several weeks thereafter Judy and I were its only members – and we still felt all alone. But then that July an SCLS patient from Idaho joined in (nwbsaw), and soon more and more patients, relatives and medical professionals came out from obscurity from all over the world and joined the site, to the point where we now count 70 members and have collectively explored more than 40 discussion topics – to most of which Judy contributed actively. This innovative way for patients with rare diseases to communicate with one another, and to share basic tips and vital information, caught the eye of _The Washington Post_ earlier this year, and the newspaper ran a story that featured the site and quoted Judy and me and other members in its February 10th, 2009 edition. So may I take this opportunity to dedicate this SCLS virtual community site to *Judith Lynne Davis*, a caring and exemplary woman, wife, mother, daughter, sister and nurse who reached out and touched so many of us and gave us the emotional support we sorely needed. Please join me in asking God to grant her husband Richard and her two sons, and her siblings and other close relatives, the strength of faith and character to endure this terrible personal loss.

Thank you for posting, my heart goes out to her and her family. Glenn and I thought we were alone in the world dealing with this disease. He never got to learn of others but, the first time on the phone with Judy, I was so happy to talk to another person living through this unpredictable illness. I appreciated deeply her openness and we spent many hours on the phone...I am deeply saddened by her passing and I am sure she will be greatly missed. My condolences to you also Arturo, as I am sure this leaves a great hole in your heart as she was your partner in all this.

Dear Richard I had not the chance nor the honour to know your Dear Judy. I have just learnt his death due to a severe episode of SCLS. She will not have time to benefit from the research on the pathophysiology of the SCLS. She has however contributed to meet us virtually and to support each other. Thanks to Her because we feel less alone with questions and uncertainties that our syndrome raises. She has allowed us to share our medical stories, our frequent trips to the hospital, but also the hope that our community has allowed to develop across the USA, Canada and in Europe. I will be eternally grateful to the SCLS community She developed and made possible to fill the vacuum that I felt when I was diagnosed with this totally unknown syndrome by most of the physicians. I address you, dear Richard, as well as all your family and friends, my sincere condolences. Claude Pfefferlé

My sincere sympathy and prayers go out to Judy’s immediate family and extended family. May she rest in peace. Ruth Nolan Christchurch New Zealand

Nolan and I are saddened by this news. Judith was one of the first people that we contacted. She has been a great support to us. She will be missed. Our hearts go out to her family, Nolan and Wendy

To the family of judy davis, So sorry to hear about your loss and judy losing her battle with SCLS. Even with all we are learning life is ever so fragile when it comes to SCLS. Since I first found rareshare about a year ago judy had always been an informed contributor. She went out of her way to share her story in order to help others with SCLS which is so important. She will be missed but not forgotten. I am thankful to all on rareshare for people like judy, dr druey,dr greipp and arturo. Progress is being made and we have to keep helping each other and the places like NIH and the mayo clinic who are trying to figure SCLS out. My thoughts and prayers are with you all. Linda. (Allen's sister)

I too am very saddened by the passing of Judy. Until my wife found rareshare, we thought there was only one more patient on the planet, somewhere in Sweden. I appreciate all of Judy and Arturo's work. Dannycfi

I was saddened to hear of Judith's passing. We exchanged information about our condition and I very much appreciated in support and her advice. My thoughts and prayers are with Judith's family and friends today. Allen

Judith Davis Funeral Information

On behalf of Richard and the rest of Judy's family, I would like to thank Arturo and others for the very moving tributes posted here. Many of you mention that Judy was a source of strength to you. Please know that this community was a great source of strength and empowerment to Judy in her struggle with SCLS. We know that participants in this forum are scattered throughout the world and are unlikely to be able to attend. We did want to make the information available, however, for anyone who might be in the area.

From Judy's obituary:

Friends may call at the "Ruck Towson Funeral Home":http://www.ruckfuneral.com/index.cfm, Towson, Maryland, on Wednesday from 2-4 & 7-9 P.M. Funeral Services will be held at "Central Presbyterian Church":http://www.centralpc.org/, Towson, Maryland, Thursday at 10 am., interment to follow at Dulaney Valley Memorial Gardens. In lieu of flowers, donations may be made to the "National Organization for Rare Disorders":http://www.rarediseases.org/helping/donate

I too am so saddened to learn of Judys passing. She was such an insipiration to us & I am so greatful for her support. My sincere condolences to her family, Arturo and all our rareshare comrads. Nancy

My thoughts and prayers are you as you say goodbye to Judy in a formal way today. I wish I could have come.

I learned today of the untimely passing of Judy. My thoughts and prayers are with her and her family. She always had time to respond to our questions about this rare disease. She was always spoken about with reverence from those that knew her best. She will be missed.

i am so sad to hear of Judy's death. when i first joined the group, judy gave me her personal email and encouraged me to write her. although, she let me know she had a very busy schedule with family, and work, she assured me i could call upon her anytime. i must admit i feel very angry. i wish she and i could have had more time to build a friendship via email. I felt her compassion and empathy and a loving spirit through her words. My heart goes out to her husband, her family, and all of the patients who were fortunate enough to have her as their caregiver. Sincerely, marilyn meaux