Greater New York Chapter Expands Patients Services with the Introduction of 2 New Support Groups

The Greater New York Chapter is proud to announce the addition of support group services in the Bronx and Queens.

The newly formed support Group in the Bronx will be held at the VA Hospital. Both Veterans and non-veterans, family, and friends are all welcome. The group will be lead by a member of the VA staff and a member of the Greater New York Chapter and will take place on the second Wednesday, monthly from 1-3 PM at the James J. Peters Medical Center at 130 W. Kingsbridge Rd, Bronx, NY 10468.

The Greater New York Chapter will also be holding the first Queens Support Group on June 21st from 6-8 PM at  SilverCrest Center for Nursing and Rehabilitation 144-45 87th Ave., Briarwood, NY 11435. Friends, family and PALS are all welcome to attend. This support group will be held every third Wednesday of the month from 6-8 PM.

Five Boroughs NYC Map with new ALS Support Groups highlighted in Bronx and Queens

“The addition of these two support groups provides a needed service that allows both PALS and family to access support in their borough, and closer to home. This will help fill a gap especially for our families in Queens. Travel is not easy for many of our PALS and their caretakers and families. We want everyone in our area to have access to the support and care they deserve,” Michelle McKenzie, Patient Services Coordinator said.

For questions regarding the new support groups you can contact Michelle McKenzie at MMcKenzie@als-ny.org or 212.720.3045.

Hospital for Special Surgery Program Expanding from Half to Full Day Clinic

The ALS Association Greater New York Chapter and the Hospital for Special Surgery are proud to announce additional clinic sessions at the Association’s Certified Treatment Center. The expansion of services will ensure that more ALS patients in our region have access to comprehensive care.

“We are excited to expand our multidisciplinary care ALS clinic to an additional day. Our clinics strive to provide high quality care, support and information for those living with ALS and their caregivers with the support of the Greater NY Chapter,” Dr. Dale Lange said.

One clinic will be reserved for new patients, the other for established patients. The current clinic is held on Wednesday afternoons. The additional HSS clinic will be held on Tuesdays at 12:30PM. For more information and/or to schedule an appointment you can call 646.797.8917 or 212.774.2361.

TEAM Ramon’s Kickers

TEAM Ramon’s Kickers

Ramon Lopez Walks to Defeat ALS in memory of his father Ramon Lopez C.
Ramon Lopez Walks to Defeat ALS in memory of his father, PALS Ramon Lopez Carrllio

High school student Ramon Lopez Florez was eager to sign up for the Long Island Walk to Defeat ALS.  In fact, at the early hour of 5:45am on the day registration launched, Ramon became the first person this year to sign up a LI Walk Team!

Ramon and his family walk in memory of his father Ramon Lopez Carrllio. Ramon’s father was diagnosed with ALS in 2010, at the age of 40. Three years later, he lost his fight to the disease.

“He was told that he couldn’t work anymore, but my dad continued to work and decided not to give up.  He said he wasn’t going to just sit around. Even with the disease, he managed to go to work for a full year after his diagnosis,” Ramon said.

Ramon was forced to grow up quickly becoming one of his father’s primary caretakers. “When we found out it was ALS, we had never heard of this, it was hard to understand. What was going to happen in the future? We had to find a way to help him. It was hard,” Ramon said.

Ramon decided last year he wanted to honor his father’s memory by joining the Walk to Defeat ALS. He formed Team Ramon’s Kickers.

“It’s good to get involved. It allows you to see you are not the only one going through tough times and there are other people looking for a cure and fighting. You are not alone in this,” Ramon said. “If we rally up into one team to find a cure, we will be one step closer to reaching our destination.”

Ramon says he will continue the fight, so no other family has to go through losing someone to ALS.

“I have so much support from my high school and my church. So many people have stepped up to either walk or donate,” Ramon said. “And I really think my dad would be very proud of me.”

Registration is now open for all 7 Walks to Defeat ALS. We look forward to kicking off walk season with all of our PALS, families, and supporters.

The ALS Association Greater New York Chapter Gives Thanks to All our Caretakers in Honor of Caregiver’s Awareness Month

eric-nelly-300

Eric and Nelly Roman -Cottes.

They are the silent warriors, the heroes that wake up every day to care for their loved ones. The caregivers whom without a second thought, step up when their family and friends are diagnosed with ALS.

Eric Roman-Cottes is the primary caretaker for his wife Nelly, and knows all too well the toll it can have on a family, but says he wouldn’t have it any other way.

“I will take care of her until the end no matter what it takes, just like she would do for me,” Roman-Cottes said.

Continue reading The ALS Association Greater New York Chapter Gives Thanks to All our Caretakers in Honor of Caregiver’s Awareness Month

Honoring CALS During National Caregivers Month

CaregiversMonth_Nov_website bannerCaregivers of ALS patients (often called CALS) are the unsung heroes of the ALS community. Oftentimes the work of family members or friends who tend to the health and comfort of a person with ALS (PALS) is greatly underestimated. A 2015 study by the National Alliance for Caregiving (NAC) found that caregivers spend on average about 24 hours a week providing care to a loved one and almost a quarter provide 41 or more hours of care per week. The NAC also estimated the cost of services provided by family caregivers at $375 billion a year, twice as much as real dollars spent on homecare and nursing home services combined ($158 billion). At the Chapter, we know that caregivers are priceless and at times they need a little TLC of their own.

Continue reading Honoring CALS During National Caregivers Month