Logo by Heather Balchunus
Alan Arena is a very busy man these days. He’s planning another Hugs For Lizbeth Benefit. His fiance has been living with Huntington’s Disease for the last nine years, and the cost of paying full time caregivers in their home can be astronomical.
Mr. Arena took some time out of his busy day to update us on the fundraising benefit scheduled for Sunday, August 7 at Joe Sent Me in Waltham, Massachusetts.
Lizbeth Clinton Granfield, Arena said, will be honored to see as many people as possible turn out to her benefit. She will be there for a meet and greet at 6:00 p.m., an hour before the music starts at 7:00 p.m.
“Every penny that comes in goes to pay for caregivers. We don’t use any money for anything else,” Arena explained. “The caregiver expense is so high. At the minimum it starts at $3000.00 a month and it can go up to six, seven thousand dollars a month, no exaggeration.”
Headliner will be Rockin’ George Leh with co-headliner Brad Faucher with Arena’s Watch City Blues Band as a quasi-house band for them. Other special guests are being scheduled to perform but are not as yet confirmed. Much is still in the works, and any professional musicians and those who play just for fun are invited to contact Arena to get involved.
“What we’re trying to do is to save space for musicians,” Arena said. “We’re asking musicians to come and start early and we’re going to do everything we can to get everybody up to do two to four songs.”
Guitarist Brad Faucher, a popular fixture in the greater-Boston blues scene, will be producing this show. Faucher is also producing a short film documentary about Lizbeth called the Hugs For Lizbeth Short Film scheduled for release on January 1, 2017.
“Brad’s a wonderful producer and he works tireless for us,” Arena said. “He’s been organizing these events, and people have been coming.”
Arena said there will also be some acoustic performances, including Joe Russo, and, Captain And Ginger. “We have a lot of support,” Arena said. “Sax” Gordon has worked for this event as well. Holly Harris, Heather Balchunus, too are involved this year. Balchunus, a professional graphic designer, created the Hugs For Lizbeth logo. “She’s done a lot,” Arena said.
Headliner Rockin’ George Leh
Support, Arena said, has come from big names and organizations. Blues For Veterans, headed by Bill Murray and based in Woburn, Massachusetts, has been an active supporter. Author Lisa Genova, who penned the novel Still Alice which became a movie starring Julianne Moore, has donated to Hugs For Lizbeth. Genova’s research for her other book Inside The O’Briens came partly from an interview she conducted with Alan and Lizbeth.
Arena said that that Lizbeth is still able to live at home eight years after her diagnosis is nothing short of a miracle. “Between me and all the caregivers we keep Liz active and happy and positive,” Arena said. “Liz was never afraid of the disease. She was afraid of not having a comfortable home to live in.”
Producer Brad Faucher was also on hand to discuss the Hugs For Lizbeth benefit.
“I’ve been working with them for a little over three years,” Faucher said. Faucher said the benefit was becoming bigger than what musicians usually put together. “We put together a non profit which will help Lizbeth stay home as long as she can.”
Faucher felt a foundation was important for Lizbeth’s ongoing needs. “We need to help the immediate issues that she faces, home care, ramps, and any kind of special accommodations that they have to have for their house.”
Faucher said that they will also move into programs to raise awareness for Huntington’s Disease. “At some point,” Faucher said, “we will also be offering counseling or financial assistance to other families who have similar situation.” The main idea, for Faucher, is help people to remain living at home.
Here is a summary: All proceeds go to Lizbeth’s fulltime caregivers.
The Aug 7th Hugs line up, so far, will be Rockin’ George Leh & Cathy (Rockin’ Shoes),
Ilana Katz Katz, Joe Russo (3 Too Many), Captain & Ginger (Jaded) Cheryl Lawn & Steve Scalzi
Lizbeth
The hosts will be Alan Arena & Watch City Blues Band, Brad Faucher (Session450), and Boston Blues Society official Beverly Kandler Dancey
Here is a previous article written about Lizbeth:
A courageous story of a woman beating the odds to live at home. An amazing journey of compassion. This is the story of Lizbeth C. Granfield
Lizbeth is a blast, she’s funny and loves to laugh. She is an independent thinking, thoughtful, generous and compassionate woman, veteran, teacher and mother of two that is living with Huntington’s disease, a progressive, incurable genetic disorder. Liz lost both her dad Robert and her brother Mark to the disease. Both her Dad and her Brother spent the last ten years of their lives in the hospital receiving assistance with bathing, dressing and eating. You can help Lizbeth to live with freedom at home while she still can. Lizbeth has been home from the hospital for four and a half years now And we’re in need of resources to keep Liz at home and are asking for help.
Every dollar we raise will go to caregivers or handicapping the bathroom or a new handicap ramp. There is some urgency to our plea. Only one in four people with Huntington’s disease even get the chance to live at home. Let me explain about Huntington’s disease. It is a progressive disease which means Liz will never get any better than she is doing right now. It breaks down the tissue in the brain and then you lose that function. The fact that Lizbeth has so much courage in facing this disease is astounding but Lizbeth needs more care now.
Hugs around the world for Lizbeth (Lizbeth Clinton Granfield) is not only a great way to raise the money we need to help Lizbeth, But also a special way to share her compelling story. Anyone that knows Lizbeth knows that her spirit is strong and that her hugs are plentiful. Even though Lizbeth has some trouble speaking, her story speaks loudly. Liz was the winner of her sixth grade spelling bee, she was a high school athlete and President of her class, worked at the bank during high school, Joined ROTC at Boston college and served as a finance officer in the Army. And after her service she went on to get her masters in teaching at Lesley collage while raising two children and going to see her brother Mark at the hospital almost every weekend for ten years. A New York Times best selling author came to interview Liz. And Liz’s name will be mentioned in an upcoming new book on neurological diseases.
This is our chance to keep Lizbeth home with her now extended family of caregivers including her dog Dexter for her remaining years. Liz likes to say, “Dog is God spelled backwards” I hope you feel the unconditional love Liz has for people and animals. Lizbeth is also the best listener I have ever met. But life happens and not everyone can reach into his or her pockets to give. But you could also use your word of mouth and your voice via Facebook, twitter and Emails etc. Let’s send “Hugs around the world for Lizbeth” as far and as wide as our voices will reach and please give what you can.
https://www.facebook.com/events/126589254435604/
https://www.facebook.com/Joe-Sent-Me-113284558701087/
https://www.giveforward.com/fundraiser/sxj6
