Ryan’s Journey: 35 Miles on his 35th Birthday for ALS

35 for 35 Run to Support ALS Association Greater New York ChapterHave you ever woken up thinking I want to do something special to celebrate my birthday this year, something to make this year really stand out? Ryan Gibeau is turning 35 on April 28th and this year he plans to make the day count. So here we are one month out from the big day and Ryan needs your support, he will be running 35 miles in Central Park to raise money and awareness for ALS.

“ALS is a terrible disease that takes away person’s ability to walk, talk, run and be in control of his or her own body. While I am still fortunate enough to be able to run I want to use my body to help those who can’t, which is why I am donating all the money from this run to the ALS Association,” Ryan said.

This is a tall task since Ryan said he’s never run a full marathon, his longest run was 20 miles, but he’s been training hard, ready to be part of the fight to cure ALS.

“I would say some people think I’m absolutely crazy and the distance is too far, but most people are really excited about it. I mean why wouldn’t you do something for such a great cause if you have the ability to help?” Ryan said.

On the day of the run April 28th, there will be a live feed so you can follow Ryan’s journey on Facebook.

Over the next month there will be incentives provided to donate money including the ability to pick and choose songs on his running playlist and, dress him up in funny costumes, and ride alongside in a Central Park Pedi-cab! Check back here frequently for updates on new donation incentives.

If you would like to support Ryan and the ALS Association Greater New York Chapter you can donate here. 100% of the proceeds will go to the Chapter and help us continue in the fight to find a cure, and to provide compassionate care to all our patients and families.

Advocating for Change on Capitol Hill: 7 Years and Counting

Janet Palkewick Advocates for ALS on Capital Hill
Janet Palkewick Advocates for ALS on Capital Hill

Janet Palkewick is defying the odds, living with ALS for nearly 27 years. She was diagnosed in 1989 while pregnant with her fourth child. When she hit the 20 year mark, she decided it was time to join the larger fight to end ALS.

“I realized I was still living for a purpose. I decided it was time to get more involved with finding a cure,” Janet said.

Which is why Janet decided to become an ALS advocate. She will be heading to Capitol Hill with The ALS Association for the 8th time this May for our Public Policy and Advocacy Conference along with her children and grandchildren. This important conference includes a day of lobbying elected officials on Capitol Hill.

“Having 7 years of experience, I’m very comfortable speaking about ALS and asking for the needed funding. Is it worth the time, expense, being drained both physically and emotionally? A great big YES,” Janet said. “I feel accomplished, I was heard. I made a difference.”

Janet admits sharing her story with lawmakers can be difficult but says the lawmakers have always been receptive.

“I have never had a bad meeting. The lawmakers or their aides have listened with genuine interest and concern. It is very important for lawmakers to understand that ALS does in fact affect the whole family. We need to show the personal side of ALS, put a face on the disease. Sometimes it gets very emotional; there are lots of tears. But that’s okay, it’s making ALS real,” Janet said.

Staying motivated and positive isn’t always easy, but Janet says the progress she has seen since her diagnosis keeps her motivated.

“More has been accomplished toward finding an ALS cure in the last 10 years than the previous 70 years. Actually, since my diagnosis 27 years ago, the most headway has been made in the last 5 years. I am hopeful! I must remain hopeful that there will be a cure in my lifetime,” Janet said.

One of the bills our advocates will be talking to lawmakers about in May, would eliminate the 5 month waiting period for disability insurance for people diagnosed with ALS. Janet says it’s important for everyone to speak up on this issue, even if you are not directly affected by ALS.

“When there is an issue to be addressed, I not only send my letter, I also ask others to do likewise. Advocacy is not limited to PALS and family, anyone can be an ALS Advocate. I am a firm believer in fundraising and advocating all year long. After all, PALS and their families need help all through the year,” Janet said.

 Advocacy week will be held from May 14th – May 16th. To join the Greater New York Chapter delegation or to find out more about how you can get involved head to our website at als-ny.org or call Wendy DuBoff at 212-720-3054.

Traveling the Globe for The Walk to Defeat ALS

Cathy Standish Travels the Globe for The Walk To Defeat ALS, in honor of her husband Fred.
Cathy Standish Travels the Globe for The Walk To Defeat ALS, in honor of her husband Fred.
Cathy Standish was reading through her husband Fred’s travelogue when she came up with an idea to honor her late husband. Fred was diagnosed with ALS in December of 2015 and unfortunately lost his battle last month. He left behind a wonderful travelogue documenting all the places he lived and worked throughout his career as a reporter for the Associated Press.

“Fred would take pictures of himself in the homes where he lived and at local landmarks.  It’s a log of every small bureau and town or city he worked,” Cathy said.

Since Fred’s diagnosis the travelogue has taken on new meaning. Cathy is determined to be a part of The ALS Association’s Walk to Defeat ALS in every city her husband has lived and worked. This includes more than 20 cities across the US.  They will then travel Greece, where Fred worked, for their own honorary “walk.”

“I think he would be really happy with my plan, he would feel the travel log meant something and there was a reason for it. Through the travelogue we are bringing awareness and hope to the ALS community,” Cathy said.

She said the decision to tackle nearly 2 dozen Walks to Defeat ALS was an easy one.

“I have a neighbor a couple doors down who also just lost a family member in NJ from ALS. ALS touches so many more people than we think. I think it touches everybody, it may be 6 degrees of separation, but I believe it affects everyone in some way,” Cathy says.

Cathy says her motivation to keep going stems from the strong bond, love and respect she shared with Fred. She said even at the very end she did what she needed to help keep Fred’s spirits up. “I would do silly little things like disco lunch time when it was time for his tube feeding. I would play a horrible disco song because Fred hated disco. And certain things like that would make him laugh and I always tried the best I could to keep him up,” Cathy said.

She admits it wasn’t always easy helping Fred keep his fight, while also taking care of herself. Cathy says it’s important to remember your own needs as well as your loved ones.

“Be kind to yourself, and have self-compassion. If you get in a fight it’s ok. My husband and I had arguments over silly things like where to hang a picture. Just because you’re a caretaker doesn’t mean you’re not their spouse anymore. Take time for yourself; every minute you can take time for yourself,” Cathy said.

Fred spent time working for the Associated Press in New York so on her walk list is the New York City Walk to Defeat ALS on May 6th.

“I’m really looking forward to coming to NYC and feeling the energy of the city. I know amongst all the people there will be so much hope, and I will be so excited,” Cathy said.

Registration is now open for all 7 of the Chapter’s Walks to Defeat ALS. We look forward to seeing all of our amazing PALS, families, and supporters on walk day!

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.

PVA Education Foundation Enables Assistive Technology Demonstration Project

PVA- Paralyzed Veteran's of America


The ALS Association Greater New York Chapter’s (ALS-GNY) Assistive Technology Demonstration Project enhances the lives of people with ALS (PALS) by building awareness of the computer and other technology that can help them communicate, and remain mobile and independent, for as long as possible. This critical effort is currently being funded by the Paralyzed Veterans of America Education Foundation (PVA), with a grant of $44,157.

The Project involves ALS-GNY’s assistive technology specialists, as well as members of our four Regional care teams, who are demonstrating a variety of available equipment to PALS, their caregivers and healthcare providers. Demonstrations take place during Home Visits and PALS and caregiver support groups, and at our five ALS-GNY Centers, area nursing homes, long-term care facilities, veterans’ hospitals, and hospices.

One PALS who benefited from the Project is a 68-year-old living in a nursing home who’d been successfully using eye-tracking software to enable communication. When the technology stopped working for her, an ALS-GNY specialist visited to find out why and provide a solution. Due to her disease progression, the patient’s posture had shifted enough to misalign her eye and computer. In addressing the issue, our specialist also trained nursing home staff about the technology and how to help their patient maintain the ability to communicate going forward. Healthcare providers also learned about the full complement of ALS-GNY’s patient services, which enhances their ability to care for every PALS in their care.

ALS-GNY is grateful to the PVA Education Foundation for their generosity, which is positively impacting hundreds of PALS, as well as their caregivers and healthcare providers, in our region.

Veteran and PALS Andrew Williams, and wife Antoinette Williams

 

The ALS Association Greater New York Chapter works hard with the help of PVA to provide services and care to veterans diagnosed with ALS.

Seen here is veteran and PALS Andre Williams, and wife Antoinette Williams.

Wrapping Up Hope For ALS This Holiday

How one woman raised $2,000 for The ALS Association Greater New York Chapter through gift wrapping.

Melinda Cantor ALS Association Greater New York Chapter

She has wrapped a small castle, a child’s go-kart, countless boxes, and secured a second-place win in the 17th Annual Scotch Brand Most Gifted Wrapper Contest for herself by assembling a large bow for the canopy of a two-person paddleboat. But on Sunday, Dec. 22, Melinda Cantor was wrapping for the love of her mother, Josephine Pace, who died in September from ALS. After an early morning appearance on the Today show in New York City (she said that she was up at 4 am to get to the taping), Cantor was in her Long Island store, Only You Gifts, to kick off a fundraiser to benefit The ALS Association Greater New York Chapter at noon.

Customers brought gifts to the little shop to have the “wrap star” give their packages a little extra holiday magic with donations going to the non-profit’s services and research for ALS, a fatal neurological disorder also known as Lou Gehrig’s Disease, named after the Yankee player who died from the disease in 1941. There is currently no treatment or cure for ALS. In addition to funding research, The ALS Association Greater New York Chapter provides vital patient services, equipment lending and support for patients and their families.

It was the services that the Chapter provided for her mother that Cantor was so grateful for and why she wanted to hold the gift-wrapping fundraiser.

“They were there holding our hands,” said Cantor on the day of the event. “We had so many questions and they gave us emotional support.”

Friends, family and customers gathered at Only You Gifts on Main Street in Islip on the weekend before Christmas to remember Pace who was diagnosed only nine months before she passed away. Cantor’s sister Michelle Rullmann was also on hand to help out. Music was donated by Ron Legotti, a friend of Cantor’s who owns a local Karaoke and entertainment company, where the gift wrapping pro also happens to be a singer. Cantor and Legotti regaled the crowd that afternoon with a duet of “Baby It’s Cold Outside” to keep the mood festive. In all the event raise $2,000 for The ALS Association Greater New York Chapter.

Cantor recalled the help her mother received from the organization this past year.

“It was amazing what they did for us,” she said. “I saw how much support they provided for us.”

For more information on The ALS Association Greater New York Chapter click here to visit the website  You can still donate to Melinda Cantor’s gift wrapping fundraiser online by clicking here.