Monica Anne Higgins ALS Fund

My name is Monica Anne Higgins.  

I’m 55 years old and I was diagnosed with ALS in July, 2017.  

It’s a devastating disease with no cure.  

I know I don’t have a long time to live, but my goal is to fill the remaining days, weeks and months of my life with as much grace, dignity and acceptance as possible.  

Unfortunately, there are many costs associated with ALS that I can’t afford on my own and that are not covered by insurance.

Which is why I need your help and generosity.  

My friends and family have jumped into action to help, and I thank them all from the bottom of my heart. And while it is difficult to ask for financial support from friends and family, it’s even harder doing so with those of you who may not know me at all.

However, I’m hopeful that once you read my story and learn more about ALS, you’ll stand with me in fighting this terrible disease.  

Thank you for considering joining me on this journey.  

With all my love,
Monnee XO    

MY STORY

I was born and raised in Quincy, Massachusetts. The second of four daughters to loving parents in a home filled with books, lively debates and social involvement.  

I have always been an independent person and one who truly loves and embraces life.

I‘m especially grateful and appreciative of the people with whom I share a piece of this earth. I consider my large circle of friends to be an extension of my own wonderful family. They are as brilliant and diverse a group as one could hope for and they continually amaze me with their warmth, wit, compassion and generosity.

I was passionate in my position as the Director of Events at the Boston Athenaeum, where I happily worked for many years among the stacks. Books have always been a source of entertainment, comfort and intellectual curiosity and my years at the Athenaeum only strengthened that love. Most recently, I worked as a restaurateur at Bondir in Cambridge, which I co-opened and designed. It seems I am drawn to vocations that require a creative and open-spirit.  

The curiosity of my nature has led me to travel a good deal of the world and discover and experience much wonder. Now I am dealing with the ultimate journey.  

MY DISEASE

I had been developing some troubling symptoms last Spring, so I decided to go to the Emergency Room at Massachusetts General Hospital.  The doctors there said they believed it to be a neuromuscular disorder. I joked, “Anything but ALS.” They quickly looked down at the floor. I knew this was not good.   

On July 20, 2017, right after my 55th birthday, I received the devastating news that I have Bulbar ALS (aka Amyotrophic Lateral Sclerosis, MND, Motor Neuron Disease or Lou Gehrig’s Disease). Some of you may know it because of the ALS Ice Bucket Challenge, or the recent news about Pete Frates, the Boston College baseball player and Beverly-native who has been fighting ALS.  

I knew it as the disease I feared most.  

No matter what you call it, ALS affects as many as 30,000 Americans at anytime, all in various stages of the fight of their lives. It is a progressive, neurodegenerative disease with half of all people with ALS living 3–5 years after their diagnosis. I am into my second year.  

MY FUTURE

Currently, my disease has progressed so that it is difficult for me to speak, swallow and smile, and I am experiencing shortness of breath and fatigue.  

The motor neurons that control the muscles in my body will all eventually be affected and make it impossible for me to move my body independently.

HOW YOU CAN HELP

We invite you to use this site to help defray some of the astronomical costs I am incurring. I understand the enormity of what I am asking and thank you from the bottom of my heart.

With eternal gratitude and love,
Monnee XO   

#prancingwithpurpose #ALS #teammonnee 

If you prefer to donate by check, please make it out to the Monica Anne Higgins, ALS Fund, C/O PO Box #690797, Quincy, MA 02269.

As we are not a 501(c)(3) charity, please understand your donation is not tax deductible.  

For more information and ways to get involved please visit:

McCourt ALS foundation http://mccourtfoundation.org/

Hope Loves Company HLC http://www.hopelovescompany.org/