The Ehlers-Danlos National Foundation
Losing a friend or family member can be devastating, and when that loss is a result of EDS it is especially tough. At EDNF we believe that our community is our strength and our love and support of each other will help us recover from these painful losses. It is important for all of us that we share and celebrate the life lived by recognizing and honoring the importance of that person’s life.
EDNF will publish any obituary or memorial article about a member of our community who has passed on. Please send your memorial in Word format to the staff e-mail. The article will remain posted for at least seven (7) days and will be visible to all guests. At this time we cannot offer the opportunity to add a photo so please send text only.
Federal tax laws prohibit EDNF from soliciting for or donating to any other entity, and doing so would jeopardize our 501(c)3 status and our ability to raise funds at all. If it is your wish to have donations made in memory of your loved one in the obituary you send to EDNF, they must be for Ehlers-Danlos National Foundation. If other donation information is included with the obituary, it will be removed before it is published here or anywhere on EDNF.org.
Willis Kehely McGregor, son of Stephen and the late Katherine McGregor, died at his apartment in the Shaw neighborhood of Washington, DC during the early morning of July 12, his twenty-fifth birthday. The cause has yet to be determined, but he had struggled for the past two years with complications stemming from Chiari malformation, a spinal and lower brain stem disorder, and Ehlers-Danlos syndrome, an inherited connective tissue disorder.
Mr. McGregor was proudly born and raised in Washington, DC. A graduate of Beauvoir and St. Albans School on the National Cathedral Close, he spent his entire life in the District, with the exception of a two-year stay with his family in London when he was a toddler, a brief stay with his aunt and uncle in Vermont when he was eighteen, and attendance at Arizona State University in Tempe. He held a variety of jobs throughout his young life and worked most recently as a legal aide at Kellogg Huber Hansen and an intern at Four Points LLC, a real estate development firm.
Widely known for his sense of humor and his compassionate disposition, he was a relentless prankster, much to the enjoyment—and occasional chagrin—of his father, brothers, and friends. Moreover, he inherited his mother’s concern for the well-being of all those who surrounded him: friends, family, and even strangers. This quality lent itself to a keen interest in the cultural and political life of Washington, DC, and a passionate advocacy of social justice. Other hobbies included playing a variety of sports and online video-games at a highly proficient level.
While his health was diminished at points over the past couple years, he had recently successfully completed an intensive program geared toward treating the symptoms of his medical conditions at Johns Hopkins Hospital and had demonstrated a steely determination to regain his well-being.
In addition to his father, Mr. McGregor is survived by brothers Stephen McGregor of London, Andrew McGregor of New York City, and Michael McGregor of Boston; a stepbrother, Gleb Drobkov of New York City; his stephmother, Nathalie McGregor of Washington; a newborn nephew, Daedalus Rowan McGregor; numerous aunts, uncles, and cousins; and countless beloved friends. A service will be held at the National Cathedral at 3:30 PM on Thursday, July 31. In lieu of flowers, donations can be made online to the Ehlers-Danlos National Foundation at www.ednf.org.
Amy passed away in her home from complications of Ehlers-Danlos syndrome. Her husband, Kelby Kidd Price, whom she married in 2003, and her parents, Bob and Elaine Bordogna, and Bell, her service dog and constant companion, were by her side. She was preceded in death by her brother, Rob, in 2007.
Amy was born in Atlanta, GA on October 3, 1971 and moved with her family to Louisville in 1980. She attended St. Francis School, Goshen and was a 1990 graduate of Brooks School in North Andover, MA. Amy attended Camp Onaway, Bristol, NH and the Outward Bound Maine Hurricane Island School. She often spoke how these experiences influenced her life to meet challenges head on. She attended Smith College and it was during her freshman year that she was first confined to a wheelchair. It was the impetus for her lifelong interest and passion to improve accessibility for those with special needs. To further this interest, she left Smith after her freshman year to volunteer her time with the Disability Rights Advocates, in Berkeley CA, an agency in the forefront during the early days of the ADA. She returned to Smith, where she served on the Northampton MA Zoning Board and addressed architectural standards for accessibility in public spaces. She graduated Smith in 1995 with a dual major in music and anthropology.
As part of her senior thesis program Amy spent a year at Union College in southeast Kentucky. Her focus was appalachian studies, culture and music. She enriched that experience by joining weekly Bluegrass music gatherings with regional musicians, singing and playing the guitar. When she returned to Louisville in 1995 she and Kelby brought together bluegrass musicians from all corners of the state for jam sessions at their home in the Highlands.
In 1996 she and Kelby started Pilgrim IT, a consulting firm that prospered until her condition worsened and the business demands were too great for her failing health. During that time she volunteered at the School for the Blind and recorded technical books that would aid those with sight impairment. These books required advanced skill in information technology and the ability to transform mathematical formulas, charts and graphs so that they could be understood by the visually impaired. Amy Bordogan was a former member of the Louisville Downtown Rotary where she donated many hours of her IT skills. She served on the Board of Directors of The de Paul School, where her primary contribution as a board member was to completely revise and rewrite the technology infrastructure for the school and empower teachers and students by bringing technology to the classroom.
She was an official judge at the Kentucky State Fair for knitting and textiles. Amy wrote grants, created business plans and offered her IT acumen to create networks for non-profit organizations locally and across Kentucky.
Her health may have limited her ability to navigate the world as others might, but she had the unique ability to bring the world to her bedside. Her interests were great: photography, drawing, metal work, cuisines of the world, knitting, textiles, spirituality and natural medicinal arts, and always music. Although she was confined to her bed for most of the last seven years Amy remained focused on her life interests, which always were growing in scope and number.
She was the best kind of friend. Even while her physical abilities were shrinking, she continued to expand the world of others by teaching and sharing her talents and she made it seem effortless. The regimen of her health care played havoc with her physical body, but she remained beautiful in her spirit to the end; charismatic, courageous, funny, generous and loving. Through all of these challenging years, it was maintaining her independence that was important to her core happiness.
Denise Ann (Sarkiewicx) Hercules, 44, of New Franklin, Ohio, left this life on Tuesday morning, October 2, 2012.
Denise was a loving, devoted mother and wife while she courageously endured the struggles of living with Vascular EDS.
She was born February 9, 1968 in a military hospital in El Paso, Texas, but lived most of her life in southern Summit County where she has been a long-time member of St. Francis de Sales Church.
She was preceded in death by her grandparents; Ralph and Sadie Kraus and John & Mary Sarkiewicz; as well as her mother, Ruth Ann. She is survived by her devoted husband of 22 years, Tom; daughter who always makes her proud, Sarah; father, Ralph Sarkiewicz; sister, Melissa; parents-in-law, Tom and Patty Hercules; brothers-in-law, Pat, Tony (Mandy), Joe (Shannon), and Vince Hercules; sisters-in-law, Tammy (Don) Dixon, Maria (Gerard) Neugebauer, and Angela Rutherford; special niece, Kayla Phillips as well as many other nephews, nieces, in-laws, other relatives, dear friends, and her faithful companion, Snickers.
Services have already been held. Full obituary and guestbook can be accessed at http://www.legacy.com/obituaries/ohio/obituary.aspx?pid=160243279.
Donations can be made in Denise's memory to Ehlers-Danlos National Foundation.
After taking fifteen years to be diagnosed with Ehlers-Danlos syndrome, and eventually being unable to continue to practice as an RN, Sue became very active in the Ehlers-Danlos National Foundation. Her contribution to our organization over the past years has been immeasurable. She took on the volunteer position of Triage Manager, handling the website HelpLine, where she answered inquiries from patients, family members, and doctors from across the globe. Sue spent countless hours helping to answer questions and directing people to the appropriate resources to better manage their illness. Though sick herself, she was determined to keep helping people, and to keep giving back. In this role, she helped hundreds of people find help, hope, and the will to move forward. Sue passed away on the morning of August 29, 2012.
In lieu of flowers, donations in Sue's name to EDNF or the American Cancer Society would be welcomed.
Barbara Goldenhersh passed away the afternoon of June 10, 2011, after a valiant battle against inflammatory breast cancer. Barb was EDNF's Communications Director, and editor of Loose Connections, the Hinge, and other publications for the Foundation. Our heartfelt condolences go to her husband, Rich, their children and grandchildren, and the rest of her family. She was one of the best friends EDNF has had, and she will be missed.
Barbara Goldenhersh received her undergraduate degree from Washington University, St. Louis, Missouri, her Masters degree from Southern Illinois University at Edwardsville, and Doctorate from Southern Illinois University at Carbondale. Author of three books, her career as an college professor ended as Ehlers-Danlos syndrome complications mounted and, once she was finally diagnosed at age 59, she realized she could use her skills as a volunteer for EDNF, the place where she found the help she needed to understand the incomprehensible. She always believed her task in life was to make a difference and she made an enormous difference for EDNF and the many lives she touched.
Shari Gamson was born in Cleveland, Ohio on July 25, 1936 to Rose and Louis Sattler. She lost her battle with cancer and passed away on January 17, 2011 in the San Fernando Valley (part of the City of Los Angeles, California).
She is survived by her husband Sherman, sister Moreen, brother Bernie, son David, daughter Teri (current President of the San Fernando Valley branch of EDNF), and her grandchildren Arik and Rachel.
Shari was very active in working with Ehlers-Danlos National Foundation. She founded and chaired the local branch and was an active fundraiser and advocate for people, including her daughter and grandson who have this syndrome.
Shari had a wonderful, caring heart and was loved by so many friends and family. She will be missed but never forgotten.
Tyson James Moore, of Perrysburg, a loving son, father, brother and uncle, passed away peacefully at the Cleveland Clinic on the morning of April 9th, 2010 after living courageously with Ehlers-Danlos syndrome for 36 years. The memory of Tyson will carry on in his son and best friend: Zachary; mother and stepfather Suzie and Billy Double; brothers: Trevor (Heather), Torren and Teagan (Laura); nephews Kaden and Braeden Moore; niece: Kiyah; and many aunts, uncles and cousins. Preceded in death by his father Thom Moore and both sets of grandparents, Tyson was the second eldest of the four brothers. Tyson was known for his unique sense of humor, quick wit, and notion to create laughter in the most unlikely of atmospheres. He also loved cooking for his family and could grill a “mean” steak. Another one of Tyson’s many talents was drawing, sketching intricate pictures and caricatures in a matter of minutes. His favorite pastimes were playing softball for the local pub and golfing. He was an avid Detroit Red Wings and Dallas Cowboys fan. He cherished the times he had fishing with his son Zach at the family cottage during the summer. Tyson was a journeyman painter for Local 7 in Toledo and continued his college education for computer technology at ITT in Toledo, where he was recognized with Highest Honors.
Visitation will be at the Reeb Funeral Home, 5712 N. Main St., Sylvania, on both Monday and Tuesday evenings (April 12 & 13) from 4-8PM. The funeral service will be Wednesday at St. James Lutheran Church, 4727 W. Sylvania Ave., Toledo, at 11AM, where friends are invited to gather one hour prior.
The family would like to thank everyone for their kind thoughts and prayers through this terrible event. In lieu of flowers, contributions may be made to the family for Tyson’s son Zachary for his future education or the Ehlers-Danlos National Foundation 1760 Old Meadow Road • Suite 500 • McLean, Virginia 22102 www.ednf.org.
Interment will follow in Toledo Memorial Park.
Ruth Ann Cooper, 56, of 916 S. East Ave. passed away at 12:08 p.m. Friday, March 12, 2010, at St. John's Hospital in Springfield.
Born April 26, 1953, in Springfield to Raymond T. and Mary Ann (Tomlin) Burget, she married Dale Rankin on July 31, 1971, in Manito. She later married Mark David Cooper on April 24, 1997, in Lincoln. He survives. Also surviving are her mother, Mary Ann Budke of Manito; five daughters, Karen (Chris) James of Manito, Kelly (Nick) McCormick of Windsor, Kim (Scott) Anderson and Kendall Rankin, both of Clearbrook, Minn., and Kori (Ben) Machlitt of Kouts, Ind.; six grandchildren, Emma James, Anna James and Ella James, all of Manito, Colby McCormick of Windsor, Amelia Machlitt of Kouts and Jacob Anderson of Clearbrook; three sisters, Dana (Andy) Busch of Mahomet, Stacy (Mike) Burks of Pekin and Gail (Randy) Watson of Green Valley; and one brother, Chris (Phyllis) Budke of Jacksonville, Fla. She was preceded in death by her father and two brothers, Glen Burget and Kevin Burget.
She was a 1971 graduate of Forman High School in Manito. Ruth worked for Midwest Central Schools in Manito since 1987 as a special education secretary, last working Monday. Previously, she worked at Pekin Farmers Grain in Manito and in the payroll division of the Illinois Department of Public Aid in Springfield. She also had worked as a cashier at the Pekin Wal-Mart from 2000 to 2006. She was a member of Trinity Lutheran Church in Manito, Mason County Farm Bureau, Ehlers-Danlos Foundation, Illinois Education Association and National Education Association. She was a charter member of the Zippo Click Club. Ruth enjoyed her family, bird watching, gardening, and reading. Her funeral will be at 4 p.m. Tuesday at Trinity Lutheran Church in Manito. Pastor Dan Chambers will officiate. Visitation will be from 4 to 7 p.m. Monday at Preston-Hanley Funeral Homes & Crematory in Pekin. Burial will be in Meadowlawn Cemetery in Manito.
In lieu of flowers, memorial contributions may be made to Trinity Lutheran Church, 110 S. Park Ave., Manito, IL 61546; or the Ehlers-Danlos National Foundation, 1760 Old Meadow Road • Suite 500 • McLean, Virginia 22102. To express condolences online, visit www.preston-hanley.com.
Michael D. Gaines beloved husband of Rebecca Gaines, loving son of Joan Gaines and the late Bill Gaines, dear brother of Dana (Karen) and Jeff Gaines, also survived by nine nieces and nephews. February 16, 2010. Funeral service 1 PM Monday at Vielhauer-Clepper Funeral Home, 2961 Madison Rd at Oakley Sq., where friends may call Sunday from 3-6 PM. Melrose Lodge #671 will conduct services 5:30 PM Sunday. Contributions may be made to Ehlers-Danlos National Foundation, 1760 Old Meadow Road • Suite 500 • McLean, Virginia 22102.
Glenn David Ross died on January 12, 2010. Glenn grew up in Potomac, Maryland, attended the University of Maryland, and graduated from Ohio Wesleyan University with a degree in business. He received his Masters in Education from Jones International University this past December.
Glenn strove to help others through his work and life. After beginning a career in business, he moved into non-profit work assisting individuals with physical disabilities. Prior to moving to Atlanta, Glenn lived in Chicago where he was diagnosed with Ehlers Danlos Type IV. He faced his disease with courage. Although Glenn knew he would not live a full life, he lived life to its fullest. When Glenn moved to Atlanta in 2001, he received his teaching certificate and became a middle school teacher. He has spent the past six years teaching 7th graders science at Richard Hull Middle School where he was deeply admired and loved. Although it wasn't always easy for him, Glenn loved to travel and ventured out to hike in Colorado, revisit Israel and for the last three summers spent week-long adventures with his father and his two eldest nephews, Eli and Isaac Lieberman.
Glenn was an inspiration to those who knew him. Even when worried and concerned about himself, he was always upbeat and tried to bring humor to the moment. Glenn loved to entertain and his presence filled a room with warmth. He was a juggler, a joke teller and great dish washer. He loved music and a beautiful sunrise. He gave of himself and his heart. When engaged in conversation, his sincerity and ability to reach out to others was remarkable. He made a friend of everyone he met. We will miss him, his calls, his concern for us, and his exuberance for a life to be lived.
Glenn is survived by his grandmother, Lillian C. Renert, his mother Bonnie Ross-Parker (Phil), his father Irving B. Ross (Doris), his sister and brother-in-law, Elizabeth Ross Lieberman and Ron Lieberman, his three nephews, Eli, Isaac and Tyler Lieberman, and beloved friend, Nancy Sternberg. Glenn will be missed by a host of relatives, colleagues, students and friends. A service will be held at 2:00 PM, Friday, January 15, 2010 in Arlington Memorial Park with Rabbi Peter Berg officiating.
Donations may be made in Glenn's memory to the Ehlers Danlos Foundation at www.ednf.org. An online guest book may be signed at www.edressler.com. Arrangements handled by Dressler's Jewish Funeral Care, 770.451.4999
Holly Kristine Jones-DeCair, 41, of Maumee, Ohio, passed away unexpectedly Tuesday, August 25, 2009, in Christ Hospital in Cincinnati, Ohio. Beloved daughter to Raymond Jones and Kay Deal, Holly was born December 27, 1967, in Toledo. Holly was employed as a dental assistant for Pero-Glinka Dentists and most recently with Dr. Scott Kelly, DDS. She enjoyed traveling, reading and loved animals always taking care of strays in the neighborhood. Holly's greatest love was her family, especially her daughters, mom, dad and siblings. The widow of Mark DeCair who passed away February 29, 2008; Holly is survived by her daughters, Brittany and Stephanie DeCair; mother, Kay (Gary) Deal; father, Raymond (Judi) Jones; father-in-law, George DeCair; mother-in-law, Jean DeCair; sisters, Jodi (Jay) Behrendt and Karen (Bryan) Lein; brother, Brad (Tracy) Jones; step brothers and sisters, Laura (Jim) Sittig, Lisa (Jimmy) Buswell, Todd (Robin) Deal, Gary T. (Elizabeth) Deal, Scott (Marissa) Deal and Susan (Joe) LaChapelle; brothers and sisters-in-law, Belinda DeCair, Jan (Dennis) Clevenger, George (Tina) DeCair, Jr. and Brian DeCair; special "daughters", Carissa Schmidt and Andrea MacRitchie and many special aunts, uncles, nieces, nephews and cousins.
Crystal Reid Austin, a business reporter for The Bismarck Tribune and former Associated Press reporter, died of complications related to vascular EDS. She was 29. She was a 2006 graduate of the University of Nebraska at Omaha and editor of the student newspaper there, The Gateway. She also worked as a reporter for The Associated Press in Omaha in 2005 and 2006. At the time of her death, Reid Austin was a business reporter for The Bismarck Tribune and managing editor of Business Watch magazine. She was awarded The Associated Press Arthur F. Burns Fellowship, which included two months working in Germany with the AP in Berlin.
In a 2007 column written for The Tribune, Reid chronicled her battle with vascular Ehlers-Danlos syndrome, which was diagnosed at birth. Reid Austin was vice president of the Bismarck-Mandan Young Professionals Network and received the 2008 Teddy Roosevelt Award for Persistence from the organization. She also founded and was the director of Capitol Shakespeare, which helps organize a free outdoor production of one of the playwright's works.
She was born in San Antonio on Feb. 28, 1980, and had lived in the Philippines, Germany, England and several U.S. states. She was the Department of Defense Dependent School System European women's tennis champion in 1998, and twice selected to participate in the Model United Nations program in The Hague, The Netherlands. Reid Austin is survived by her husband, Rod Austin, whom she married on July 11. Other survivors include her parents, Frank and Brenda Reid of Plattsmouth, Neb., two stepchildren, a sister and a grandmother.
She will be missed.
Grace succumbed to vascular Ehlers-Danlos syndrome on February 11, 2009. Grace was especially loved by the members of EDNF who knew her through her attendance at our National Educational conferences and her local group. She was dedicated to work for improvement in all types of EDS. She transcended interest in her particular form but instead had empathy and consideration for every EDNF member. Many will recall her comment: “I have vascular but I am lucky because I don’t have the pain you do”. She cared for each of us and worked tirelessly to raise awareness, provide advocacy and and just show love to each and every member as anyone who knew her can tell you. We thank her for her many creative projects such as the Taxi Cab advertising and attendance at the many medical conferences held in San Diego.
Matthew was born July 1st, 1986 in Oakland, California. He is survived by his loving sister, Megan Mahoney, and his cherished parents, Mike and NancyMahoney, who were all at Matt’s side when his struggle with Vascular Ehlers-Danlos syndrome ended on January 2nd, 2009. Matthew is also survived by his two grandmothers, Avelina Mahoney of San Pablo, and Kapitolina Kiniery of Sonoma, as well as many loving aunts, uncles, and cousins. He will be missed by his many friends who appreciated Matt for his kindness and his sense of humor.
Matthew lived in Richmond his entire life and attended local schools. He graduated from De Anza High School in 2004 and later attended Kaiser’s School of Allied Health and became a licensed phlebotomist. He worked briefly for the American Red Cross and as an apprentice piercer at Eastbay Tattoo in Brentwood. It was Matt’s aspiration to someday own a tattoo parlor and piercing studio. Matt was a strong man with an understanding heart and possessed wisdom well beyond his years. He loved a good joke, a good party, and especially a good hardcore music show. Matthew was appreciative of the doctors and staff at Kaiser medical centers in Oakland, Richmond and Walnut Creek, as well as UCSF, for their extraordinary care.
A celebration of life memorial service was held at 11:00 am on Saturday, January 10, 2009 at Holy Angels Chapel, located inside St. Joseph Cemetery, 2560 Church Lane, San Pablo. In lieu of flowers, please consider a donation in Matthew’s honor to the Ehlers Danlos National Foundation at www.ednf.org.
Cherylann Kathryn Gonzales, 31, a life-long resident of Albuquerque passed away in Houston, TX on Wednesday, December 31, 2008. She is survived by her parents, Floyd and Angela Gonzales; partner, O.J. Hinojos; step-children, Jeremy and Adriannna Hinojos; brother, Floyd " Guerro" Gonzales; niece, Lydia Gonzales; nephew, Brandyn Gonzales; grandmother, Merlinda Gonzales; and numerous other relatives and friends. Cherylann was preceded in death by her grandparents, Miguel and Casimera Sena; and grandfather, Leandro Gonzales. She was born on July 6, 1977 in Albuquerque and graduated from El Dorado High School in 1995. Cherylann received her Associate’s Degree in Psychology from Santa Rosa Jr. College in CA. Prior to pursuing her passion as a youth counselor for troubled teens Cherylann worked at Southwest Childcare and AOL. Cherylann never met a stranger, being a friend to all. She was a loving partner, step-mother, daughter and sister and will be deeply missed by all who knew her. Friends may visit French Mortuary, Wyoming Blvd. Chapel, Sunday, January 4, 2008 from 5:00p.m. until the Rosary begins at 6:00 p.m. Mass of Christian Burial will be held at The Shrine of Saint Bernadette, 11401 Indian School Road NE Monday, January 5, 2008, 9:00 a.m.. with a reception following in the Parish Hall. Pallbearers will be Edward Sena, Stephen Sena, Ray Gonzales, Bruce Werely, Selina Wade and Valerie Chavez. Honorary Pallbearers will be Becky Lujan, Adelita Romero, Lydia Gonzales and Brandon Gonzales. Cremation will follow. Memorial contributions in Cherylann’s name may be made to theEhlers-Danlos National Foundation.