Losing a friend or family member can be devastating, but when that loss is a result of EDS it is especially tough. At EDNF we believe that our community is our strength and the 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 ability to raise funds at all. If it is your wish to have donations made in memory of your loved one, 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.

AMY BORDOGNA-PRICE
passed away January 11, 2013

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 Price 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 Bordogna 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. A 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 a 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.

In lieu of flowers, it is Amy's wish that donations be made to Paws With Purpose or Hosparus. A gift of time to someone in need would be very meaningful to Amy and reflect her generosity of spirit.

DENISE ANN (Sarkiewicz) 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.