Tuesday, December 07, 2021

Person of the Week

Inspired by Max: Murphy Part of a Team Effort Supporting Cure Rare Disease

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Whitney Murphy counts herself lucky to be part of an extraordinary family and group of dedicated supporters inspired by her six-year-old nephew, Max Herzog (shown here riding with Murphy) as part of a team effort that’s raised more than $1.3 million, in just three years, to assist the research of non-profit biotech Cure Rare Disease through events held at Pine Orchard Club including “Love Fore a Cure,” which raised $600,000 on Sept. 10.

Photo courtesy of Whitney Murphy

Whitney Murphy counts herself lucky to be part of an extraordinary family and group of dedicated supporters inspired by her six-year-old nephew, Max Herzog (shown here riding with Murphy) as part of a team effort that’s raised more than $1.3 million, in just three years, to assist the research of non-profit biotech Cure Rare Disease through events held at Pine Orchard Club including “Love Fore a Cure,” which raised $600,000 on Sept. 10. (Photo courtesy of Whitney Murphy)

When it comes to accelerating the race to find a cure for the rare disease of Duchenne muscular dystrophy (DMD), Whitney Murphy counts herself lucky to be part of an extraordinary family and group of dedicated supporters helping to make great strides toward the goal.

Whitney’s nephew, six-year-old Max Herzog of Branford, is an animated and loving youngster living with DMD. Max has also become the touchstone of an exceptional effort that’s raised more than $1.3 million, in just three years, to assist the research of non-profit biotech Cure Rare Disease (CRD). The Boston-based group is developing gene therapy treatment targeting DMD as part of its work developing customized therapeutics, based on genetic code, for those diagnosed with rare, genetic diseases that have no treatment or cures.

On Sept. 10, Max’s extended family, backed by sponsors and a network of caring volunteers, held “Love Fore a Cure,” their third annual CRD fundraising event the Pine Orchard Club. The golf, tennis, and boating event raised more than $600,000 for CRD in one day, says Whitney.

“I’m speechless about it. This is CRD’s most successful event, as far as I know, to date, and certainly ours, by far,” she says.

For her part, Whitney runs the annual event’s tantalizing silent auction. This year, the auction included some 90 items, all of which were donated. That made quite an impression on event staff helping Whitney organize the fundraiser at its digital charitable auction platform, Givergy.

“I didn’t realize that was kind of a big deal until we were putting everything on the platform, and we were telling Givergy how many items we had,” says Whitney. “They were shocked that these items were all donated rather than items that had been purchased. And they were awesome items! The generosity of the community is truly tremendous.”

Whitney says her role is just a small part among so many involved in this “team effort.” In addition to community sponsors, supporters, and volunteers, the annual event’s success is a credit to Max’s entire extended family and also to many who are connected to the Herzog family business of East River Energy (ERE) of Guilford, a national CRD sponsor.

Whitney’s dad and Max’s grandfather, Don Herzog, is CEO of ERE and her brother, Jesse, Max’s dad, is president. Max’s mom, Stephanie Herzog, serves on the CRD board of directors and is perhaps most pivotal of all when it comes energizing everyone involved with this annual fundraising event, Whitney adds.

“Our whole family, whether it’s Jesse and my dad securing donations through their business; or Stephanie, who is coordinator of the entire event and party planner extraordinaire; or my mom writing personal thank you cards to each and every donor; or Stephanie’s parents and sister helping with all of the signage and graphic design; or her dad, who runs his awesome ‘Pop’s Hotdog Stand’ on one of the holes...everybody really, truly plays a part,” says Whitney.

That of course also includes Whitney’s husband, Matt Murphy, owner of a wholesale wine and liquor distribution company that donates wine for the event. The Branford couple has two young sons of their own, Jack, 4, and Dillon, 2, who “both absolutely love their big cousin, Max,” says Whitney, who’s expecting the Murphy family’s third child in December.

“Seeing how much they love and support each other is what life’s all about,” says Whitney.

Speaking of support, the ERE employee family and its circle of company connections are also a huge part of this annual fundraising effort every year, says Whitney.

In 2019, the inaugural event, a golf tourney at the Pine Orchard Club, was co-hosted by ERE Retail Manager and family friend Dave Rettig and ERE Marketing consultant and family friend Lynn DeJoseph and raised more than seven times the goal—over $380,000. The two continue supporting as co-hosts of the event, including in 2020 when it raised more than $330,000 over two days. Their efforts were also recognized in The Sound—Retting was a 2019 Person of the Week and DeJoseph a 2020 Person of the Week. Both Rettig and DeJoseph remain deeply invested and involved in helping the cause each year, Whitney notes.

“We truly couldn’t do it without them,” she says.

Supporting Swift Success for CRD

Thanks in no small part to the extraordinary work of Max’s family and local supporters, since Max was first diagnosed with DMD 5 ½ years ago, CRD has rapidly advanced its gene therapy treatment for children living with the rare and fatal disease. DMD weakens and limits muscle function over time. In 2022, Max is scheduled to be the second person to receive a beneficial gene therapy treatment developed by CRD that has already yielded positive results for him in multiple rounds of lab tests.

Whitney says the remarkable progress of CRD is reflected in the effort of Max’s parents. It began at the moment of their son’s diagnosis, when “the doctors told Jesse and Stephanie to ‘Just go home and love your son,’ because at that point, there was really nothing they could do since there was no real treatment, let alone cure, for DMD.

“I knew Jesse and Steph would leave no stone unturned because they are the strongest people I know, and if anyone could find a way to help Max, it was them,” says Whitney. “Fast forward 5 ½ years, and it truly feels like a miracle that we’re in this place today.”

She says the family is grateful to CRD founder and president Rich Horgan and his brother, Terry Horgan, as well as “our truly incredible community” for reaching this milestone. Rich Horgan founded non-profit CRD, inspired by his brother, Terry, who was born with DMD. In the coming months, Terry will be the first person to receive the gene therapy treatment.

“Words can never express how grateful our family is to each and every person and business who has and continues to support Max and CRD in any and all capacities, from monetary donations to emotional support and love,” says Whitney. “The words ‘Thank you’ will never be enough.”

On behalf of the family, Whitney also thanks the Pine Orchard Club and its members and staff for “always going above and beyond for the event every year.”

Even though the success of the Sept. 10 event is still fresh, everyone is already planning their part to make sure the 2022 event will also be a success for CRD, inspired, as always, by Max, says Whitney.

“Max has enabled me and our entire family—and everyone who meets him—to love harder and appreciate life in a way we never could have before,” she says. “I could not be more proud to be his Auntie Whit.”

Anyone wishing to get involved locally with future efforts to support CRD can contact Whitney Murphy at whitney.a.murphy@gmail.com. To learn more about CRD or to make a donation online, visit www.cureraredisease.org.


Pam Johnson covers news for Branford and North Branford for Zip06. Email Pam at p.johnson@shorepublishing.com.

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