When you look a person in the eye, and talk heart to heart, you are making a direct connection. For many people with HHT, Trish Linke was their connection to lifesaving guidance, a community of support and the Cure HHT organization.
Trish discovered HHT in the late 1980s when her mother began to have life-threatening GI bleeding. She was terrified and no one in the family knew what to do about it. When Trish went to the library to get books on genetics, hoping for information, she found "The HHT Patients Registry,” with the name and phone number for Bruce Jacobson, PhD, at the University of Massachusetts. He was the first person outside her own family that she had known who had an HHT diagnosis.
Bruce put Trish in touch with Dr. Bob White and Sharon Victor, who were both involved with the fledgling HHT board. She became one of the original members of the HHT Foundation Board of Directors, formed in 1990, and she took it upon herself to start the “Direct Connection” newsletter.
In the early days she created all of our publications and pamphlets, handled advertising, mailed information packages and entered new community members into the database. For more than a decade, she served on the Board of Directors in several capacities: vice-president, secretary, Internet and website coordinator and annual conference organizer.
She designed and moderated the HHT Message Forum to give people an open avenue to ask questions and seek advice. Trish dedicated countless volunteer hours guiding people who felt scared, misunderstood and alone providing critical resources they needed
As the patient education liaison, Trish made it her personal challenge to correct the misinformation about HHT. When working with someone in crisis, Trish would stay by the phone until this individual was out of danger.
Trish was instrumental in advancing the Foundation’s mission and creating the strong organization we are today. It is with great sadness that we say goodbye to one of the most passionate HHT advocates.
Trish was born an only child in Vancouver, British Columbia during World War II. She and her dad, who had a contract with Harz Mountain pet company, loved animals. Over the years, Trish’s family home was also a haven to American Shetlands, appaloosas, Yorkshire terriers, Siamese cats, Dalmatians, African lovebirds, raccoons and pigeons.
Thanks to a very artistic mother, who passed away at the age of 94 due to HHT complications, Trish had lots of singing, music, dancing and art lessons. Her mother loved to direct church productions while Trish acted in them.
A Wife and Mother:
Her husband of 54years, Frank, her daughter, Kathy, son Matt and granddaughter Courtney survives Trish. Frank was a constant support to Trish.
He was also a tremendous help in the early years of the HHT Foundation. During the patient conferences, he was always available to do anything that was asked of him. He assisted with planning and preparation for the meetings, helped with audiovisual needs, ran to make reprints of materials, transported people and helped with the heavy lifting. Trish and Frank have supported the foundation through its entire evolution.
Matt remembers his mother as being a person who always advocated for him and encouraged him to follow his dreams. Kathy credits her mom, for letting her children be free spirits – learning to ride horses, ride motorcycles, ice skate and sled.
A Lover of Life:
In addition to being the international link to all those affected by HHT around the world, she is . . .
- A watercolor artist, calligrapher, musician, astronomer, equestrian and huge science fiction fan.
- An avid professional ice hockey fan
- A nerdy collector with Star Wars, Star Trek, Stargate, Lord of the Rings and Queen Amidala memorabilia.
- An environmentalist who fought to protect the salmon population in the creek running through her family’s property.
- A car enthusiast who owned two 1960s muscle cars - a Camaro and a Z-28, which she used to drive
- A teacher who instructed a variety of topics including Sunday school, folk singing and junior choir. Trish also worked for 22 years as a preschool teacher.
We will miss Trish dearly and offer our deepest sympathy to the Linke family – her husband Frank, children Kathy and Matt, and granddaughter, Courtney.
In a gesture that could not better encompass her loyalty and generosity, Trish and Frank requested in lieu of flowers that those wishing to honor Trish’s memory make a donation in her name to the Cure HHT.
We invite you to sign the guestbook for our tribute to Trish – you are welcome to share a story or fond memory, or simply express your condolences at this time.