Welcome to Hearts for ALS NY

Our mission is to increase awareness and understanding of ALS through volunteer services, and act as a resource for patients and caregivers to improve quality of life for those affected by Lou Gehrig's Disease. Please click the following links to learn more about us, what we do, and how you can help.

What is ALS?

About Hearts for ALS NY

Upcoming Events

Donations and Support

Helping Out Is What We Do

Through volunteer work, donations, events and other types of support, Hearts for ALS New York assists those affected by ALS by providing equipment, medicine and much more. Click below to learn more about the people that we help, and how we help out. Plus, find out how you can lend a hand to people around New York State that need your assistance and support.

How Hearts for ALS NY Helps

Event Photo Galleries

Support our Efforts

The ALS Ice Bucket Challenge

The Ice Bucket Challenge to raise awareness for ALS hit the Internet in August and almost immediately became a viral trend. With celebrities, athletes, and even former presidents taking part, the campaign increased donations by 3,500 percent compared to the previous year, according to Forbes.

Did you participate in the ALS Ice Bucket Challenge? Share your videos with us by clicking here and watch others take the challenge themselves!

Submit Your Video

How It Helped

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Hearts   for   ALS   NY   News   and   AnnouncementsMore News and Announcements

Hop’eration ALS Event

Posted on September 25th, 2017

Event Description (From the Facebook Event Page: https://www.facebook.com/events/110070869708180):

The event will be held at The Rock Shrimp Co., 4775 Lake Ave., Rochester, NY. This will be a beer event with a number of Rochester area breweries designing a special beer just for this event. Each brewery will develop a beer and they will all be using a specialty hop designed just for raising money for ALS research. The Hops were donated by Lotus Ranches, one of the largest hop farms in America. Lotus Ranches is a huge supporter of ALS research and puts on the Ales for ALS event every year where they donate hops to breweries across America and then a portion of the beer sales goes to ALS Therapy Development Institute.

Advanced tickets will be available online through Eventbrite. Tickets will be $20 in advance and $25 at the door. All money will go to De-Feet ALS, Inc. a nonprofit raising money for ALS research.

Food will be available and music by Chris Moore Acoustic.

The Breweries will be RG Brewery, Gael Brewing Company, Knucklehead Craft Brewing, Fairport Brewing Company and Noble Shepherd Craft Brewery.

Set this date aside and come out for some great beer, music and a lot of fun!


When: Saturday, October 21 at 5:30 PM – 9:30 PM

Where: 4775 Lake Ave, Rochester, New York 14612

Tickets: https://www.eventbrite.com/e/hoperation-als-tickets-37126695947

Vathxira’s 585 MAKE A DIFFERENCE Charity Day

Posted on June 9th, 2017

Join us to benefit Donate Life America, NKF Serving Upstate New York (National Kidney Foundation) and Hearts for ALS NY.

Many ways to participate. Scramble format in the golf tournament ($400 per foursome or $100/individual) Registration will close by June 11th. We have people who sign up as individuals/pairs and we will pair you up with fun people). For those that don’t golf, we are planning a friendly style cornhole tournament that will start late afternoon the same day $10/person or $30/person includes buffet style dinner. If you care to just come for dinner, $25 (buffet style includes pasta, chicken, beef and sides) $100 hole sponsorship or any prizes are welcome as donations. Raffle tickets will be available all day and prizes will be raffled at dinner time (don’t need to be present)

Want to know more about the Vathxira’s 585 MAKE A DIFFERENCE Charity Day

Click Here

The 12th Annual Jeff Dunlap Celebration of Life Golf Tournament

Posted on May 9th, 2017

Its that time of the year again and we are proud to announce our 12th Annual Jeff Dunlap Celebration of Life Golf Tournament! This year we will be at Victor Hills Golf Course and our special guest and all proceeds will go to Mike Dugan!



Click here for PDF Document

2017 Joe Marinucci Cruise for a Cure

Posted on May 1st, 2017

6th ANNUAL “Cruise for a Cure”
With Honorary Captain
Joe Marinucci

Join us Saturday, August 5th 6:30PM – 9:00PM for some fun on the water and a great cause at the Hearts for ALS NY Cruise for a Cure benefiting one of our favorite PALS, Joe Marinucci. This is the 6th Annual Joe Marinucci Cruise for a Cure and the event has been a huge success, a lot of fun and a great help to the Marinucci Family.

Meet us at the Voyager Marine, Marina Drive and fun will be had all evening long including buffett dinner, cash bar, raffles as we set sail on a sunset cruise!

Tickets are $40 per person and can be purchased through PayPal or with any major credit card using the button below. Please contact us if you have any questions.



Register for the Crop for Impact Event

Posted on January 24th, 2017

Come spend a day with other “scrappers” and “crafters” and be creative all day.

Enjoy continental breakfast, beverages, lunch, raffles, door prizes, vendors – AND help make an impact on a local organization with patients and caregivers affected by ALS in our own community.

  • Date: Saturday, April 8, 2017
  • Time: 9:00am to 5:00pm
  • Location: Greece Baptist Church
  • 1230 Long Pond Road
  • Rochester, NY 14526

Cost: Early Bird $35 / After February 15, fee is $40

Registration Deadline: March 18, 2017 (Limited to 60)

To Register: Register and pay online using the PayPal button below (all major credit cards, and PayPal accounts accepted). You may also register by requesting a registration, vendor or donation form from Cindy at zindyj@aol.com or Debbie at dsecules@rochester.rr.com

Make checks payable to Hearts for ALS NY and include the following note on check: “Crop for Impact – Registration”

Register Here:


Crazy ‘Bout You at St. Mary’s Place

Posted on July 26th, 2016

Hearts for ALS, NY and The Caring Music Group partner in a benefit to raise funds and awareness for people living with ALS: Commonly known as Lou Gehrig’s disease.

The benefit is Saturday, October 22, 2016, The Dugan Center, 15 St. Mary’s Place, Rochester, NY. Come join us for a night of heart-warming fun, recognition and renewal of purpose.

Purchase Tickets:

Guest Names

7th Annual Dice Run this September!

Posted on July 3rd, 2016

Join us for the 7th Annual Hearts for ALS NY Motorcycle Dice Run on Saturday, September 10, 2016!

Location: “The Brick”, 5 West Greenwood Street, Andover, New York

Registration will begin at 10:30am / Check back in by 4:00pm
Ride at your own page. (Not a parade ride)
Driver $5 / Rider $5

Chicken and Biscuit dinner is open top the public. 4:00-6:00pm
$5 for all rider participants / $8 for general public
Guest Speaker Debra Quinn / ALS Awareness

Sponsored by: Andover Haunted House & Vietnam Vets Legacy Vets MC / American Eagles MC
For more information, contact Bob Meyers: (607) 661-6784
Website Link: http://www.andoverhauntedhouse.com

Article: Father’s Memory Inspires A Cross-Country Run To Raise Money for Lou Gehrig’s Disease

Posted on January 22nd, 2016

Check out this article that appeared in PEF (New York State Public Employees Federation) magazine recently detailing a cross country run benefiting those affected by Lou Gehrig’s disease:

Intro: “As medical research advances, the odds of beating some diseases increase. But when someone is diagnosed with Amyotrophic Lateral Sclerosis, more commonly known as ALS or Lou Gehrig’s Disease. “ALS is not an incurable disease, it is an underfunded one,” said Steven Luther. This PEF member who works for the state Education Department Office of Professional Discipline in Rochester is making a nationwide effort to get more ALS funding. he is organizing a team of 16 runners who will state a cross-country run from the Golden Gate Bridge in San Francisco and end at Coney Island in New York – a 3,300 mile route…”

For the full text, click here: http://heartsforalsny.org/wp-content/uploads/2016/01/HeartsForALSNY-SteveLutherPEFArticle-2016.pdf

Happy New Year and Thank You!!

Posted on January 2nd, 2016

It’s hard to believe it but 2016 is here and we’re looking forward to another year of helping, fundraising and advocating for those affected by ALS in Upstate New York.

We’d like to thank everyone – our PALS, volunteers, donors, friends and family – for all of your support, love and help in making 2015 such a great year.

We closed out this year with a wonderful Holiday Party which allowed us to spend quality time with one another – thank you to everyone that attended, and a special thank you to the Downstairs Cabaret at Winton Place for hosting the event.

Photos from the Holiday Party are below (if you attended the party and took photos that you would like added to our gallery, please contact us). (more…)