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In August, Branford resident Dave Rettig co-chaired a Branford golf tourney that raised more than $380,000 to benefit non-profit Cure Rare Disease (CRD). Boston-based CRD works to support the development of life-saving therapeutics for children impacted by rare disease. (Photo courtesy of Lynn DeJoseph )
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Dave Rettig will tell you he’s just part of a team that’s supporting a very important effort, but his friends and co-workers say otherwise. In August, Dave co-chaired a Branford golf tourney that raised seven times the goal—more than $380,000—to benefit national non-profit Cure Rare Disease (CRD). Boston-based CRD works to support the development of life-saving therapeutics for children affected by rare disease.
“CRD said this was the most successful event they have ever had. In no small part, it was because of Dave’s incredible hard work,” says friend and event co-chair Lynn DeJoseph, who contacted The Sound because she, and many others, feel Dave has had so much to do with the event’s success.
The tourney was a charitable project supported by East River Energy (ERE), where Dave is retail manager. Locally owned and operated in Guilford since 1984, ERE provides heating oil and propane to thousands of customers statewide. ERE is a national sponsor of CRD.
Dave and his wife Laurie are also long-time friends of ERE President/CEO Don Herzog and his wife, Nancy Herzog. The four knew each other from their high school days in West Haven (Dave and Don played football together) and went on to raise their families as friends. The couples also both settled in Branford (the Rettigs have lived in town for about 35 years). Dave even coached Don’s son, Jesse (now ERE’s vice president), in youth football.
As a company, ERE has a reputation for supporting local and national charitable programs. One of its newest efforts, helping to support CRD, especially hits home: The Herzog’s four-year-old grandson, Max, is living with a rare, fatal disease, Duchenne muscular dystrophy.
Max is the son of Jesse and his wife, Stephanie. The Branford couple found CRD after spending many years searching for help for Max, who was diagnosed at six months. Stephanie Herzog recently joined the CRD board and brought the idea of putting on a fundraising golf tourney at Pine Orchard Yacht & Country Club (POYCC). She serves on the POYCC Board of Governors and chairs the Entertainment Committee. The busy mom is also CEO, founder, and owner of Home & Commercial Interior Design Firm. In addition, she’s a board member of Branford Arts and Cultural Alliance.
Dave came to ERE 13 years ago, after retiring from a full career as a telecommunications sales and marketing executive. Throughout his career, Dave has organized charitable events and tourneys for various organizations. So when Dave found out some last-minute help was needed to pull together the golf tournament to benefit CRD, he offered to assist.
“It was really just being planned as a golf tourney with a dinner after, to raise some money for CRD,” Dave says. “The first time we met with Steph, she was hoping to make $50,000, but it was only 35 days away and there was still a lot to be done. So me and Lynn said, ‘Don’t worry about it. We’ll take care of it.’”
DeJoseph, president of marketing company DeJoseph, Ohlsen Group of Orange has curated ERE’s advertising for many years and already knew Dave from his professional past, including his work as a director with SNET Yellow Pages. She says his work to assist the tourney was critical.
“His dedication to making this tournament successful, his countless early morning hours before work, late nights, and weekends, organizing the events, and general advocacy was amazing,” says DeJoseph. “His words were always, ‘Whatever you need’ if the family needed help or a committee member had a request.”
“Lynn was phenomenal,” Dave says of his co-chair. “She was the first person I called when I got involved with this, and she didn’t hesitate.”
Dave also had another call he felt he needed to make to help the tournament succeed. This one was definitely a difficult ask, but it made all the difference, he says.
“I handle a lot of Donny’s charitable donations [at ERE] as part of my job. Every week, if I don’t get seven or eight requests from [national] and local charities [it’s unusual]...and they’re all great. A lot of times, though, there’s no personal connection,” says Dave. “So we asked Steph, would she be willing to step out and write a letter about Max and what’s going on. And to her credit, she did it. I’m sure it was gut-wrenching, but when she wrote that letter, it now took it to a personal level. And then, everything just really hit warp speed.”
Up until that point, very few people knew about Max’s diagnosis, and those who did, didn’t really have a way to help, says Dave.
“It really was the courage of the Herzog family to open up and kind of put it out there,” says Dave. “Once that letter got out, everything changed. There was just so much pent-up demand to help, and when the letter came out there was a way to help and the floodgates opened.”
In her letter, Herzog shared how Duchenne, which impacts boys, robs the ability to walk by age 8 to 10 and drastically cuts life expectancy (most boys live beyond their early 20s, at best). After 3 ½ years of leaving “no stone unturned” to try to help Max, she said the Herzogs found CRD founder Rich Horgan in 2018.
“There is so much to share with you, but in short, Rich’s younger brother, Terry, has Duchenne. After graduating from Harvard Business School, Rich formed a non-profit organization, CRD, that set out to develop a radically new approach to treating rare, fatal diseases. The idea is to develop therapeutics based on the individual, rather than a ‘one size fits all’ approach, as has been traditionally done,” she wrote.
Addressing the Need
Horgan witnessed Duchenne not only affecting his brother, now 23, but three generations of family members. Recognizing the need to create collaboration among researchers and the importance of speeding up the process involved in developing a therapeutic treatment. Horgan, who is also Blavatnik Life Science Entrepreneur-in-Residence at Harvard Business School, set up CRD as a nonprofit biotechnology company.
As part of its mission, CRD sends 99 percent of all funds raised directly to lab research. Much of that research is taking place right here in New Haven, at Yale Medical School, Dave notes.
Even more exciting: Some success has already occurred, as Herzog shared in her letter.
“After only six months, this past April, [Horgan’s] team of world-renowned researchers (curated by Rich), including researchers here at Yale Medical School, developed a customized therapeutic [treatment] that successfully cured his brother’s disease in the lab. This cutting-edge therapeutic (based on gene editing technology known as CRISPR) successfully upregulated Terry’s dystrophin levels back to normal in his cells, effectively curing them. It’s quite amazing and a feat that has never been done before,” she wrote, adding, “... I believe CRD is our best hope at finding a cure for our Max. Now, we not only have hope, but confidence in this team that our son will be able to live a full life after all. Max is next in line for the treatment, but there is so much to do.”
Dave encourages people to go to the CRD website cureraredisease.org to learn more, and to make a donation to help.
“CRD itself is an amazing story,” says Dave. “You talk about a grassroots movement. This young kid, Rich Horgan, has dedicated his life to helping his brother and people like Max.”
On a local level, Dave wants to express his gratitude to the organizations, individuals and businesses who showed their overwhelming support for the Golf to Cure Rare Disease event at POYCC on Aug. 26.
“It really started as an event to raise some money and create awareness, that I think turned out to be the biggest event ever at the Pine Orchard Club,” says Dave. “It sold out. It was amazing. We got donations from [ERE] business partners, the Branford community...and the Pine Orchard Club and the membership was phenomenal.”
Dave says he will continue his work to support CRD and build awareness.
“The best thing is the people who did get involved [with the tourney], they want to stay involved. I’ll get emails asking, ‘What’s coming next; what can we do?’” says Dave.
Dave, Lynn, and the golf tourney committee are already planning for another tourney to benefit CRD, he adds. This time, Dave says, they’ll get the word out well in advance of the date.
“There was such an outpouring of love and support from the people who came out—we couldn’t put another person in the place. The biggest problem was after the event, we found out a lot of people still were not aware of it. It just came so quick that people were surprised and didn’t know about it,” says Dave, adding, “I think I found something I can do when I retire. This is something you like to stay involved with. It’s all good.”
The 2020 guide to the Madison Chamber of Commerce has arrived!