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Why We Walk: Team Charley’s Angels

Why is the Walk to Defeat ALS so important to patients, caregivers, friends, and family?

Even more than the sense of community, love, and friendship on Walk Day, your support of the Westchester Walk to Defeat ALS provides much needed care and equipment to patients as well as advancing research for treatment and a cure for this devastating disease. Each of our Walk Teams have their own unique stories about why they Walk each year. We’d like to share one of those stories with you about Team Charley’s Angels who Walk in honor of Charley Braunfeld and in memory of Leon Braunfeld.

During this holiday season, we hope that you’ll remember why you Walk and continue to support all of our amazing families.


When The ALS Association Greater New York Chapter asked me to draft this email, I thought about it for three days, started several drafts and almost told them I couldn’t do it. As devoted as I am to the fight against ALS and as appreciative as I am of all that the ALS Association offers, each draft started to come across as a letter of despair, outlining the difficulties Dad and our family have faced since Dad’s diagnosis almost seven years ago.

But, then, I started thinking about my children (ages 4 ½ and 1 ½), my niece (age 5 ¾…she’s very specific about the ¾) and my nephew (age 3 ½).  What would they say if you asked them about Grandpa? What would they say about Walk Day? What would they say if they were asked to share their positive energy with the ALS community?

They would enthusiastically yell “there’s nothing bad about Walk Day!” and run to get their Charley’s Angels t-shirts.

They would tell you that they are Grandpa’s special helpers and talk you through all of the things they do to take care of Grandpa: how to make sure his arms are comfortably positioned, how to drive his wheelchair; how to hold the buttons on the wheelchair and the Hoyer lifts; how to carry Grandpa’s pillows and arm braces from floor to floor when it is time for Grandpa to get ready for bed; how to stand in front of Grandpa when you speak to him so that he can see you.

They would gleefully reenact the ALS Ice Bucket Challenge by grabbing whatever containers they could find and announcing (through uncontrollable giggles), “I am participating in the ALS Ice Bucket Challenge in honor of Grandpa and I am going to challenge [whichever other person was in the room watching their reenactment]!!”

And the youngest would run over to Grandpa’s wheelchair and announce “Bhampa…up” – her method of telling the nearest grown-up that she wants to go for a ride in Grandpa’s wheelchair while sitting on Grandpa’s lap.

Each of them would tell you how much they love Grandpa and how much Grandpa loves them. And what makes their relationships with their Grandfather even more beautiful is that they never knew him before the disease; they were each born after his January 2010 diagnosis. They don’t know who Grandpa was before the disease took over his body.  For these children, Grandpa is a paralyzed, fully-dependent man in the wheelchair who can’t talk, move or eat, but who loves old movies, has an eclectic taste in music, who smiles from ear to ear (as best he can) when they enter the room and who loves them to the moon and back.

So, as we each consider our end of year donations … As we each get ready for Walk season 2017… As we each continue to care for the ALS patients and caregivers in our lives and remember those that we have lost – let’s each see the fight against ALS through the eyes of children.  Everything we do, no matter how seemingly small a gesture, matters and makes a difference. Every opportunity to join Walk Day is a chance to walk side by side with people you love. Every dollar you can donate is one proverbial step closer to a cure.

Everybody truly can be an Angel!

Want to meet these adorable children? Charley’s Angels will see you at the Westchester Walk in June!

Wishing you and your loved ones health, strength and happiness in 2017.

Jessica B. Turnof
Charley’s Angels

Westchester Walk Team: Charley's Angels, Walking to Defeat ALS 2016
Westchester Walk Team: Charley’s Angels, Walking to Defeat ALS, 2016

Revolutionary Study Identifies New Genes Involved in ALS

Barrow Neurological Institute and IBM Watson Health today announced results of a revolutionary study that has identified new genes linked to amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. The discovery gives ALS researchers new insights that will pave the way for the development of new drug targets and therapies to combat one of the world’s most devastating and deadly diseases.

The groundbreaking discovery involved IBM Watson, a cutting-edge form of artificial intelligence, to help unravel the mysteries of the brain and provide Barrow scientists with never-before-known data. IBM Watson became known around the nation in 2011 when it competed against human contestants on Jeopardy, and won. Continue reading Revolutionary Study Identifies New Genes Involved in ALS

Help Us Fulfill Our Technology Holiday Wish List

The ALS Association Greater New York Chapter would like to thank you for helping make 2016 a great year!

We rely on your continued support to provide our PALS with the equipment and assistive technology loans they need to make their lives and the lives of their families as easy as possible. Through our Equipment and Assistive Technology Loan Program, we provide PALS with more than 1,000 pieces of equipment and devices each year. This enables our patients to remain more independent and have the ability to communicate for a longer period of time than would be possible without this equipment. Unfortunately, we often have a wait list for patients to receive equipment, so the more pieces of equipment we have for loan, the faster they get into the hands of our patients! This is why we need your help.

Please help us fulfill our equipment and assistive technology wish list by donating today!

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Senate Passes 21st Century Cures Act, December 7th

Senate Passes 21st Century Cures Act

Yesterday, the Senate passed the 21st Century Cures Act, sending the groundbreaking legislation to President Obama’s desk for a signature. The new law will provide billions of dollars to help accelerate the discovery, development, and delivery of promising new treatments by funding research and streamlining the drug review process. Importantly, the bill also will help preserve access to complex rehab technologies (CRT) power wheelchair accessories.

The 21st Century Cures Act is groundbreaking legislation that has taken over two years of negotiations. Thank you to all of the ALS Advocates who wrote letters, made phone calls and spoke to legislators about the legislation. Because of your hard work, ALS Association priorities were included in the final legislation. Continue reading Senate Passes 21st Century Cures Act, December 7th

The ALS Association and Prize4Life Announce Five Finalists for $400K Assistive Technology Challenge

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November 22, 2016
The ALS Association and Prize4Life announced today the five finalists for the ALS Assistive Technology Challenge, a $400,000 award for the development of flexible, accessible technology to help people with ALS communicate with ease. The winner of the challenge will be selected in Dublin, Ireland, on Monday, Dec. 5 at the International Symposium of ALS/MND.

“Each one of the five finalist groups took a unique approach for tackling the challenges facing people living with ALS. We are very excited about these innovative and groundbreaking technologies and are confident that any one of them has the potential to make a significant impact on the quality of live of people living with ALS and their families and caregivers,” said Maya Bronfeld, Ph.D., Prize4Life Scientific Officer. Continue reading The ALS Association and Prize4Life Announce Five Finalists for $400K Assistive Technology Challenge

Make Your End of the Year Gifts Really Count: Join the Fight against ALS

Pictured: Joe and Verna Brown.

The holiday season and the end of the year is upon us. As the year wraps up and you are looking to make charitable donations Joe Brown wants you to consider giving to the ALS Association Greater New York Chapter. Joe’s wife Verna was diagnosed with ALS during last year’s holiday season in December of 2015, and since then he has seen firsthand just how devastating this disease is.

“The ALS Association provided my wife with a power wheelchair as long as she needs it. Her ability to speak has been greatly reduced and, being a former English teacher, that is really difficult for her, so we are also on the waiting list for an eye tracking device,” Brown said.

These services are available free of charge to Verna and Joe because of your generous donations.

“This holiday would be a great time to make a gift to the ALS Association Greater New York Chapter, so they can continue their care and research,” Joe Brown said. “It would be a wonderful gift for someone who is suffering from the disease who could greatly benefit from the research, and medical services this gift would provide.”

Joe and Verna have been married for 54 years. Verna now lives in a nursing home, and Joe said adjusting to being home alone has been difficult. He credits the Chapter’s support groups with helping keep his spirits up.

“The ALS Association has been a bedrock, and so supportive both emotionally, and when it comes to medical services. Anyone dealing with ALS knows just how important the emotional help can be,” Brown said.

More than 750 PALS and families rely on the Chapter, and rely on your funds to help fuel their fight.

“My wife is an inspiration. She is amazing and she is still the social butterfly of the nursing home and a fighter. She has her down days but we still have our laughs and she’s fighting,” Brown said.

Join in the fight alongside Verna and Joe Brown by donating to the The ALS Association Greater New York Chapter and help us continue to provide compassionate care, advocate for patients and families, and fund the research that will hopefully lead to an effective treatment and cure for ALS.

“It is one of the most devastating of all diseases, because the body betrays the individual, but the mind continues to work,” Brown said. “So please don’t give up on the fight because we aren’t. Let’s find a cure so no one else has to suffer with ALS.”

New UBQLN2 ALS Mouse Model Replicates Many Key Disease Features

An ALS Association-funded research team led by Mervyn Monteiro, Ph.D., Professor at the University of Maryland School of Medicine in Baltimore, has developed a new mouse model that faithfully replicates many aspects of the disease, including the formation of characteristic aggregates of an ALS-linked protein called TDP-43. The new model was created by inserting a mutant ubiquilin 2 (UBQLN2) gene, an important contributor to protein recycling, according to a new study published this week in the Proceedings of the National Academy of Sciences. The new model will help decipher how mutations in UBQLN2 cause ALS in people, and more generally how defects in protein recycling contribute to neurodegeneration.

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which leads to total paralysis and death, usually within two to five years of diagnosis. For unknown reasons, veterans are twice as likely to develop ALS as the general population. There is no cure, and only one drug approved by the U.S. Food and Drug Administration (FDA) modestly extends survival.

UBQLN2 acts as a shuttle, ferrying misfolded proteins to the cell’s protein recycling machinery. Mutations in UBQLN2 were discovered in 2011 as a rare cause of ALS-frontotemporal dementia (FTD), a related neurodegenerative disease. In the new study, Dr. Monteiro and the three primary co-authors Nhat Le, Ph.D., Lydia Chang, Ph.D. and Irina Kovlyagina, Ph.D. inserted the mutant UBQLN2 gene into mice. The mice developed progressive muscle weakness and paralysis, as well as memory deficits. Analysis of brain and spinal cord tissue showed the development of characteristic protein aggregates similar to those seen in human disease, including aggregates containing TDP-43, which are common to almost all forms of ALS.

“This new mouse model is an excellent tool that mimics many of the components of ALS,” said ALS Association Chief Scientist Lucie Bruijn, Ph.D., M.B.A., “and in combination with other models, is likely to help us develop new therapies.”

Because this mouse model develops TDP-43 aggregates, it may be especially important for determining whether and how these widespread protein inclusions contribute to disease. This information should be directly useful for deciding whether to target TDP-43 aggregates in treatment development.

Veterans Are Twice as Likely to Develop ALS

Happy Veterans Day and a big thank you to all those who have served this country.

Did you know that Veterans of the US Armed Forces are twice as likely than the general population to develop ALS?

That is why ALS is now deemed a service-connected disease, entitling veterans with ALS to special services through the Department of Veteran Affairs (VA). However, the sad fact is many veterans and ALS patients don’t know that these services are available to them”

“I only learned through the ALS Association that I was eligible to receive services through the VA. Without the ALS Association I would have been completely lost,” ALS patient and Vietnam veteran Don Deola said.

This is why the ALS Association Greater New York Chapter needs your help — so we can continue to provide our PALS with supportive services like home visits and medical equipment loans, continue to advocate for all PALS, including Veterans, and fund research that will ultimately lead to a cure for this debilitating and fatal disease.

Don wants everyone to remember just how much a simple act of kindness and thanks means to our men and women of service.

“It took 30 years for anyone to thank me for my service,” Deola said. “If there is one thing you do this Veterans Day it should be to tell a returning vet thank you for your service, because it means the world to us.”

Please show your support and thanks to our Veterans with ALS by donating today to the ALS Association Greater New York Chapter.

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

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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

Take Action: Help Ensure Medicare Covers New Treatments for ALS!

Help  ensure that  Medicare covers new treatments for ALS as soon as they are developed. It is critically important that we act now because a number of promising treatments are in development and several could be approved within the next few years. If those treatments are approved, but not covered by Medicare, many people with ALS simply will not have access to them.

Continue reading Take Action: Help Ensure Medicare Covers New Treatments for ALS!

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