Person of the Week
DeJoseph Assists on the Fundraising Forefront to Help CRD
Co-chair Lynn DeJoseph helped raise more than $330,000 over two days in Branford to benefit the cutting edge research supported by non-profit Cure Rare Disease (CRD). DeJoseph and co-chair Dave Rettig organized the second annual CRD Golf Tourney and added on ‘CRD After Dark’ events to raise funds on behalf of national CRD sponsor East River Energy of Guilford. (Photo courtesy of Lynn DeJoseph )
In a year when most fundraisers have been canceled or otherwise compromised by COVID-19, Lynn DeJoseph helped raise more than $330,000 over two days in Branford to benefit the cutting edge research supported by non-profit Cure Rare Disease (CRD).
The funds were raised during an innovative approach to what started off as the second annual CRD Golf Tourney in Pine Orchard, hosted by East River Energy (ERE) of Guilford. The tourney, founded in 2019, was once again co-chaired by Lynn with Dave Rettig. Dave was featured as a Person of the Week in The Sound last year following the duo’s remarkable launch of the tourney, which raised $450,000 for CRD. It was CRD’s single-largest fundraiser of 2019. The tourney is held at Pine Orchard Yacht & Country Club in Branford.
Lynn is president of marketing agency DeJoseph Ohlsen Group in Orange and Dave is ERE’s retail manager. Both put their hearts into their volunteer work on behalf of CRD to assist their friends and business colleagues, the Herzog family, owners of ERE.
ERE President Jesse Herzog and his wife, Stephanie, reside in Branford and are the local leads working to assist CRD in its mission to treat or cure rare genetic diseases, including Duchenne muscular dystrophy. The disorder causes a DNA duplication that prevents the body from creating functional dystrophin, the protein needed to repair muscle. The Herzog’s son Max, 5, was diagnosed with Duchenne at six months old.
“We’ve made a tremendous amount of progress over the past year,” says Jesse Herzog of CRD. “We’re completely self-funded, so the work of Lynn and Dave and the support of the Branford and Guilford communities, and my business community, has been priceless.”
With such tremendous success on their side, Lynn says this year’s golf tourney was expected to be just as beneficial for CRD as was last years’—until COVID-19 came along.
“Because we had a golf tournament and it was hugely successful last year, there were contacts that were established, and we were going to reach out even further than those contacts,” says Lynn. “But then the [COVID-19] challenge this year was that we couldn’t have as many people. Everything had to be cut in half! Things that you don’t even think of had to be considered, like social distancing and the number who could attend the dinner—we had a wonderful dinner afterward. All of this couldn’t happen. So we had to come up with a way we could make an event that was successful for CRD but also memorable and enjoyable for everyone who could come. So that’s where ‘CRD After Dark’ came in.”
In addition to hosting 84 golfers at this year’s tourney and dinner on Sept. 11 (last year, pre-COVID restrictions, the tourney drove in 150 participants), other events added over the course of the two days teed up many more participants, who came out to enjoy many other options, explains Lynn.
“Granted, not everybody plays golf, so we expanded this out to be inclusive of so many different things,” says Lynn, adding the solution will likely go on to become part of the formula for next year’s fundraising efforts.
Above and beyond the offer of the golf event, participants were enticed with options including a cruise through the Thimble Islands aboard the Sea Mist or a visit to a spacious Pine Orchard home on Sept. 10 to partake of a socially distanced combination of fun events including a poker tourney, roulette, a black jack tourney, a diamond jewelry trunk show, and Irish bar.
After all was said and done, even with slicing down the number of golfers, overall event participants pulled together to help raise $330,000, which is, Lynn believes, also the single largest fundraiser of 2020 for CRD.
Lynn says the effort couldn’t have come off without the additional help of so many who support the tourney and this fundraising effort. They include friends of the company, personal friends, Herzog family members, and many other families who are involved with supporting CRD to help their loved one and others like them.
Jesse Herzog is humbled by the amazing support being gathered here on behalf of CRD.
“It’s so touching,” he says.
Herzog is a second-generation member of ERE, which has been locally owned and operated in Guilford since 1984. ERE provides heating oil and propane to thousands of customers statewide and is well known for its support of many charitable causes and community efforts.
“If you know about my business and my family, we’ve been giving back to our community since our inception; it’s sort of instilled in our core values,” says Herzog. “I haven’t given a whole lot of thought about how difficult it is for people to ask, because I never was faced with it, and then we had Max, and I realized that it’s a lot easier for me to write the check than for me to ask for checks. So to see and know people who have intimate relationships with me, my family, and my business—and some who have even a distant relationship—to see them step up and be willing to participate in something that I think is going to change the course of history for Duchenne muscular dystrophy and beyond, is priceless.”
ERE is a national sponsor of CRD. Herzog credits his wife with finding and connecting with CRD founder Rich Horgan in 2018, when Max was three. Horgan’s younger brother, Terry, has Duchenne. After graduating from Harvard Business School, Rich Horgan formed CRD in Boston as non-profit biotech company with the goal of developing a radically new approach, individualized therapeutics, at a sped up rate created through collaboration among world-renowned researchers.
As part of its mission, CRD sends 99 percent of all funds raised directly to lab research. CRD’s work includes research taking place at Yale Medical School, where, in April 2019, research team members had a hand in developing a customized cutting-edge therapeutic treatment, based on gene-editing technology known as CRISPR. The treatment effectively cured Terry Horgan’s disease in the lab setting, by successfully upregulating Horgan’s dystrophin levels back to normal in his cell sample.
Herzog likens it to an “in vitro” cure and is excited to share that a cell sample from Max achieved the same results earlier this year.
“The lab at Yale was able to fix his duplication, so for lack of a better term, he’s been cured ‘in vitro,’” says Herzog. “So we know we have the ability, using CRISPR technology, to fix his cells in the lab. So the question becomes, how do we deliver those fixed cells back to his body? We often struggle with the question, ‘Have we completed 50 percent of the puzzle, or 75 percent, or 25 percent?’ We don’t really know. But we know we’ve summitted a huge mountain in being able to cure Max’s cells in vitro.”
CRD is currently awaiting FDA approval for applying the treatment to a patient. The first patient is planned to be Terry Horgan, now in his 20s.
“We made our presentation for FDA approval about a month ago, and if we are successful with FDA approval, then Terry will be treated, hopefully in three to five months,” explains Jesse. “And if we’re successful with Terry, we will have a proof of concept and be able to, I think, get the next [FDA] approvals for younger, healthier patients like Max.”
Lynn says she’s thrilled to continue to support the incredible success of CRD through her volunteer work for the non-profit, on behalf of ERE and the Herzog family.
“Clearly, CRD is on the forefront of what’s happening,” says Lynn. “They’re doing remarkable things, and making strides every day with it.”
To learn more about CRD or to make a donation, visit cureraredisease.org.