Jeff & Anthony's Hike for a Cure
Donation protected
Hi, my name is Anthony Romano, a 15-year old who lives in Hallowell, Maine. I'm excited to share that my Dad and I are hiking 271 miles on the Long Trail in Vermont to help raise money for The Hearts for Ezra Foundation and their mission to raise awareness and fight for a cure for Spinal Muscular Atrophy (SMA), the #1 genetic killer of children under the age of 2.
This fall I will be a sophomore at Hall-Dale High School. A lifetime hiker, I have climbed 53 of New England’s 67 four thousand foot peaks. I also enjoy playing sports and fishing.
At 271.3 miles, the Long Trail follows the main spine of the Green Mountains from the Quebec to Massachusetts borders. Known as the “Footpath in the Wilderness,” it is the nation’s oldest long distance trail (built between 1910 and 1930).
My father, Jeff Romano, has been hiking for more than 40 years. He has shared his passion about hiking in New England by writing three guidebooks: Best Loop Hikes from New Hampshire’s White Mountains to the Maine Coast (2006), Classic Hikes in New England (2010), and Day Hiking New England (2015). When he is not hiking, he manages public policy for Maine Coast Heritage Trust, a statewide land trust that focuses on the conservation of Maine’s unique coastline.
While we have the pleasure and opportunity to enjoy hiking and exploring the Long Trail this summer, others are not so fortunate. A few years ago, a young boy from my home town died tragically at the age of eight months from a disease I had never heard about: Spinal Muscular Atrophy (SMA), a debilitating and often fatal genetic neuromuscular disease. His name was Ezra and he brought smiles to all he touched. Ezra’s parents Ethan and Emily Bessey, along with our pediatrician Dr. Kieran Kammerer, created Hearts for Ezra to educate people about SMA.
In only a few years, Hearts for Ezra (HFE) has done an incredible job educating families, health professionals, and the general public about SMA. HFE has donated a lot of money to a support group for families, CURE SMA, which provides financial assistance, emotional support, and medical and paramedical equipment to patients and families suffering from this heartbreaking disease. Services include medical research; donations of wheelchairs and other equipment; home-based rehabilitation and therapy; emergency home help, and much more. The goal of Hearts for Ezra is to find a cure for SMA, so other families don’t lose their beautiful children to this disease.
Our goal for this hike – in addition to creating some great memories - is to raise $2,713 for Hearts for Ezra: $10 for each mile of the Long Trail. We hope you will consider making a donation to help us reach our goal. As we hike, we will be carrying a heart rock to remember Ezra by, as well as our HFE bracelets and necklace that Ezra’s sister Daisy gave to us. While we know that doing such a long hike may get tiring or discouraging on certain days, our challenges will be nothing in comparison to families coping with SMA. We are grateful that we are blessed to have healthy legs and strong muscles to carry us along our journey, and will be sending periodic updates on our journey.
Please consider making a donation on this page to Hearts for Ezra. Every dollar raised will go support families living with SMA, and to help find a cure.
This fall I will be a sophomore at Hall-Dale High School. A lifetime hiker, I have climbed 53 of New England’s 67 four thousand foot peaks. I also enjoy playing sports and fishing.
At 271.3 miles, the Long Trail follows the main spine of the Green Mountains from the Quebec to Massachusetts borders. Known as the “Footpath in the Wilderness,” it is the nation’s oldest long distance trail (built between 1910 and 1930).
My father, Jeff Romano, has been hiking for more than 40 years. He has shared his passion about hiking in New England by writing three guidebooks: Best Loop Hikes from New Hampshire’s White Mountains to the Maine Coast (2006), Classic Hikes in New England (2010), and Day Hiking New England (2015). When he is not hiking, he manages public policy for Maine Coast Heritage Trust, a statewide land trust that focuses on the conservation of Maine’s unique coastline.
While we have the pleasure and opportunity to enjoy hiking and exploring the Long Trail this summer, others are not so fortunate. A few years ago, a young boy from my home town died tragically at the age of eight months from a disease I had never heard about: Spinal Muscular Atrophy (SMA), a debilitating and often fatal genetic neuromuscular disease. His name was Ezra and he brought smiles to all he touched. Ezra’s parents Ethan and Emily Bessey, along with our pediatrician Dr. Kieran Kammerer, created Hearts for Ezra to educate people about SMA.
In only a few years, Hearts for Ezra (HFE) has done an incredible job educating families, health professionals, and the general public about SMA. HFE has donated a lot of money to a support group for families, CURE SMA, which provides financial assistance, emotional support, and medical and paramedical equipment to patients and families suffering from this heartbreaking disease. Services include medical research; donations of wheelchairs and other equipment; home-based rehabilitation and therapy; emergency home help, and much more. The goal of Hearts for Ezra is to find a cure for SMA, so other families don’t lose their beautiful children to this disease.
Our goal for this hike – in addition to creating some great memories - is to raise $2,713 for Hearts for Ezra: $10 for each mile of the Long Trail. We hope you will consider making a donation to help us reach our goal. As we hike, we will be carrying a heart rock to remember Ezra by, as well as our HFE bracelets and necklace that Ezra’s sister Daisy gave to us. While we know that doing such a long hike may get tiring or discouraging on certain days, our challenges will be nothing in comparison to families coping with SMA. We are grateful that we are blessed to have healthy legs and strong muscles to carry us along our journey, and will be sending periodic updates on our journey.
Please consider making a donation on this page to Hearts for Ezra. Every dollar raised will go support families living with SMA, and to help find a cure.
Organizer and beneficiary
The Hearts for Ezra Foundation
Organizer
Hallowell, ME
Hearts for Ezra Foundation
Beneficiary
