Sophie Berman | April 27, 2021

Hope is "In the Bag"

Hope is “In the Bag”

 

Hope is everything in life, absolutely everything.


The truth is, I am the most hopeful person. Even when my husband, Brian, was diagnosed with ALS, which is a terminal disease, I was hopeful. We’ve lived with ALS for four years now and I remain hopeful. That’s not to say I don’t have my moments where I am emotionally challenged; fearful, sad, and anxious. Yet, I still cling to hope. The hope that one day, sooner than later, there will be a cure.

ALS is a cruel disease. The diagnosis of ALS is a death sentence that no one wants to ever have to face. Everything is taken away from you, everything. You lose your ability to tie your shoes, button your shirt, hug your loved one, walk, eat, speak, and eventually the ability to breathe.

Less than 10 years ago, hope really didn’t exist for ALS patients and their families. There were very few clinical trials or new drugs and therapies. Now, more than ever, researchers are working tirelessly to find cures for ALS. This brings me hope.

The Sean M. Healey and AMG Center for ALS at Massachusetts General Hospital’s core goals are to boldly accelerate the development of effective treatments for ALS and provide access to the best treatments for all their patients.

The Healey Center  provides access to experimental therapies for many patients with ALS who might not be eligible for clinical trials, like my husband, Brian. The Healey Center Expanded Access Protocol (EAP) currently offers 9 investigational treatments and has nearly 100 patients enrolled at Mass General. They partner with pharmaceutical companies to provide the drugs; they rely on philanthropy to cover the costs of patient qualification, enrollment and coordination, along with the analysis of study results. The cost estimate to provide EAP to one person per year is $10,000.

 

Hope is “In the Bag”.

 

For the month of December, any time you purchase a handbag at Lori’s, we will be contributing 10% of the sale to the Healey Center’s EAP program. You can help bring hope to so many ALS patients and their families. Your purchase will help ALS patients gain access to the most current experimental drugs and therapies available.

Happy holidays and here’s to finding cures!

xoxo Lori

https://www.lorisshoes.com/collections/handbags

 

Click to learn more about Massachusetts General Hospital’s Healey Center for ALS and the Expanded Access Protocol Program.

 

Links

Healey Center: https://www.massgeneral.org/neurology/als

EAP: https://www.massgeneral.org/neurology/als/research/expanded-access



Comments:

  • Alayne says...
    On December 08, 2020

    Your dedicated world on behalf of your beloved B and all ALS patients is inspiring. We’ll join and share your story.
    xo,
    Alayne

  • Karyn Altshuler says...
    On December 08, 2020

    Lori,
    This is awesome! I love buying this bag for my daughter-in-law knowing the good you are doing with the donations to ALS research. What an added bonus for my purchase. Thank you for what you do!! 💚 Karyn

  • Eliza C says...
    On December 08, 2020

    I purchased a bag as a gift without knowing about the donation. A good reason to buy myself one! Peace, Joy, and HOPE to your family through the holidays, and always.

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