Volunteer: Provide Help, Provide Hope
Volunteers are vital to the Chapter's mission. Their work and dedication not only helps, but also inspires. We recently caught up with one of the Chapter's longtime volunteers - Beverly Cotrone, who lost her husband of 37 years to ALS nearly ten years ago. Since then she has helped numerous patients in various volunteer capacities. For one woman Bev assisted, her being there meant the patient's son could take the night off from providing the round-the-clock care his mother needed. With another patient, Bev simply brought dessert and sat and laughed, while his wife was able to get out of the house for a bit. Bev noted, “There's not a lot of laughing going on caring for someone 24/7.” Her presence brought some of that laughter back.
Beverly gets her drive to volunteer from her own experience caring for her husband Joseph. She gladly attended to him, but recalls how she often felt “trapped”. She would sometimes look out the window and wish she could simply take a walk around the block. She is there so others can do just that and so much more.
Do you want to do more for people with ALS? Do you live in Westchester County or the Hudson Valley region? We need YOU!
We need volunteers to help our patients and their families in the region. Some People with ALS (PALS) are in need of assistance with household tasks, such as food shopping and light cleaning, while some PALS need companionship and someone to share simple life moments that provide entertainment and a sense of normalcy - being read to, crossword puzzles, or simple conversation. Additionally, families and caregivers of our PALS also need assistance, in order to lighten their work load and better enable them to care for their loved one.
To get involved please call Christine Dunn at (212) 720-3044 or email dunn@als-ny.org.
New Finding in ALS Strengthens Role of RNA in Disease
In work funded by The ALS Association through its support of Regina-Maria Kolaitis, Ph.D., a Milton Safenowitz Post-Doctoral Fellow, researchers have shown that an ALS-related protein is involved in clearing RNA-containing material that builds up in cells, including neurons. The finding suggests that loss of that clearance ability may contribute to the disease.
The material affected is a combination of protein and RNA called stress granules. RNA is used by cells to make proteins. Stress granules form temporarily when cells are under stress. The researchers found that mutations in a gene for valosin-containing protein (VCP) reduced the ability of cells to move the stress granules to vacuoles, cell structures that degrade and recycle many parts of the cell. Mutation in VCP is one cause of ALS.
“This study contributes to the growing understanding of the role of RNA processing in ALS,” said Lucie Bruijn, Ph.D., Chief Scientist for The Association. “The results strengthen the case that inability to handle RNA during [cell] stress may be a significant factor in the disease.”
The Milton Safenowitz Post-Doctoral Fellowship for ALS Research Award encourages and facilitates promising young scientists to enter the ALS field. Funding for this two-year research award is made possible by the generosity of the Safenowitz family through the Greater New York Chapter of The ALS Association and is in memory of Mr. Safenowitz, who died of ALS in 1998.
The study was published in the journal Cell. To read the full ALS Association statement and to view the journal abstract, click here.
I'm considering the options of making our bathroom more accessible. There is not a lot of room, but I would like to build a roll-in shower. How do you stop the water from going beyond the shower area?
Darren S., Rye, NY
When there is limited room to start with, you'll likely want to avoid both sliding or hinged doors. Sliding doors require a track on which to roll. Though the track itself does prevent water from going beyond the shower area, it also creates an obstruction to the wheels of a wheelchair, thereby blocking an entire area getting in or out of the shower. Similarly, hinged doors can have a 'water blocking runner' on the bottom. The runner slides along the floor creating a water tight barricade, so when the door is closed, it keeps water within the shower area. The challenge with a hinged door though, is that many bathrooms just don't have the space for the door to swing open. If the swing of the door hits the sink or toilet when opened, it decreases the accessible space to roll into the shower.
One option you may consider is a collapsible water stopper. It is a soft rubberized strip that is glued to the floor. It stands about 1-inch high, but is flexible when pushed down, so a wheelchair can roll right over it. It then bounces back up when the pressure is removed. Pitch and water flow towards the drain, should still be taken into account, but a collapsible water stopper can be a simple solution that reduces excess water from going beyond the shower area.
Lastly, instead of a door, you could also use a weighted shower curtain that can be easily drawn away from the shower entrance and close snuggly once drawn shut. One of these solutions should be able to provide easy access, while maintaining a water tight barrier.
- Ben
To ask Ben a question, simply email him at blieman@als-ny.org or call at (212) 720-3057. Ben will answer all questions directly as usual, but not all questions will appear in the Monthly Update.
Spring Walk to Defeat ALS Wrap-Up
While the weather didn’t always cooperate, the Spring Walk Season was a wonderful success thanks to all of the dedicated teams and supporters! Thousands of Walkers turned out this season, rain or shine, to help raise awareness and funds to help Defeat ALS!
The 2013 Walks kicked off in May at Pier 45 in NYC. It was a beautiful Walk along the Hudson and the perfect way to start the season! The Long Branch Walk on May 19th was a bit soggy but that didn’t stop hundreds of dedicated Walkers from coming out to help us raise awareness! A little (or in this case a lot) of rain never stopped our indomitable Walkers!
June began with record breaking attendance at the Saddle Brook Walk. Over 1,500 Walkers were treated to great food, music and a beautiful day to celebrate and raise awareness! The next Walk on the calendar brought us to TD Bank Ballpark, home of the Somerset Patriots for our Chapters first-ever Walk in Bridgewater! It was a great day, with over 30 Teams walking, including our special guest, former Major League pitcher and Somerset Patriots Manager Emeritus, Sparky Lyle. The Spring Walk season culminated with a spectacular day at Manhattanville College, the new home of the Westchester Walk. It was a warm and beautiful day on campus with over 500 Walkers turning out to strike out ALS.
In total, the Spring Walk season was truly wonderful and through the incredible efforts of our PALS, friends, families and caregivers, the Greater New York Chapter Walk program has raised over $1 million dollars to date!
But wait! The 2013 Walk to Defeat ALS campaign isn’t over yet! We hope you’ll join us in the Fall for one of our two remaining Walks this year Long Island (September 22nd) and Hudson Valley (October 20th)! Visit our website at www.alswalks.org to find out more about those Walks. Thanks again and have a great Summer!
A-MAZE-ING Lou Gehrig!
Following a wonderful season last Fall with a corn maze in the likeness of Lou Gehrig, the good people of Alstede Farms of Chester, NJ recently presented the Chapter with a check for $2,000 for ALS research and patient care services. Thank you Alstede family!!!
Read more about it here, on NJ.com http://bit.ly/130R7K5
I Walk Because...
ALS patients, family members and friends tell us why they Walk to Defeat ALS for The ALS Association Greater New York Chapter's "I Walk Because..." campaign. Click here to see some of the "I Walk Because" videos our teams have done with us. Send us your video towalk@als-ny.org and tell us why you Walk to Defeat ALS.
National ALS Registry
It's been over two years since the National ALS Registry opened through the Centers for Disease Control & Prevention. The federal government continues to make major strides in the Registry, updating questions on the various surveys and informing those with ALS about the tremendous usefulness of this tool. As the third year unfolds, we should begin to see some of the preliminary results from the Registry and get one step closer to finding the causes of the disease and therein ways to treat it and stop it all together.
If you are living with ALS and have not yet enrolled, please do so today. If you have enrolled, but have not completed the full array of surveys, it is important that you do so and provide as much information as possible. Please visit www.cdc.gov/als.
For more information about the registry go to www.als-ny.org or call the Chapter office at (212) 720-3044 and ask for Chris Dunn.
In Need of Help?
If you are a patient, caregiver, or family member and need a little help to lighten your work load please contact us and we will request a volunteer for you. Volunteers can help in many ways - from walking your dog, shopping, or just reading aloud.
If you live in New York please contact Christine Dunn at (212) 720- 3044 or dunn@als-ny.org. If you live in New Jersey contact Debbie Schlossberg at (732) 710-8832 or schlossberg@als-ny.org.
Join our Young Professionals Group
The YPG generates awareness of the fight against ALS (Lou Gehrig’s disease) by developing fun, sophisticated and meaningful opportunities for their peers to get involved in the cause.
The next general meeting will be August 7th.
The Young Professionals Group (YPG) Summer Happy Hour will be held on July 16th at Brinkley’s NYC on Broome Street, from 6:30 - 9:00 pm. For info contact Loren Domilici at ldomilici@als-ny.org or (212) 720-3060.
For other information about the ALS Association's Young Professionals Group, please click here or contact Loren Domilici at ldomilici@als-ny.org or (212) 720-3060.
Información en Español
The Greater New York Chapter website now has information on ALS and
Chapter services in Spanish. If you know someone with ALS who may need
information in Spanish, please refer them to www.als-ny.org/espanol.
MAKE A DIFFERENCE
Advocate
The Greater New York Chapter continues to be on the front
lines of policy debates that shape the lives of people with ALS. From healthcare to research to veterans affairs, The ALS Association Greater New York Chapter is at the table on the federal, state and local levels of government making the concerns of ALS patients and their families and caregivers known.
If you're interested in joining our advocacy efforts, please contact Daryl Cochrane at dcochrane@als-ny.org or (212) 720-3051.
Volunteer
We need volunteers to help our patients and their families. Some PALS may need help with daily tasks; families and caregivers of our PALS may need help as well to lighten their work load a bit. There are so many ways to help - from watching a video together or reading, or even helping with some household chores.
If you are looking for a way to get involved please call Christine Dunn at (212) 720-3044 or email: dunn@als-ny.org for New York, or Debbie Schlossberg at (732) 710-8832 or email: schlossberg@als-ny.org for New Jersey.
Donate
Make a generous gift to find a cure and fund life saving research and to provide much needed equipment and services. To make a donation online, please click here. Call Loren Domilici, Development Manager, at
(212) 720-3060 or email ldomilici@als-ny.org. To mail a donation, please address to: The ALS Association Greater
New York Chapter, 42 Broadway, Suite 1724, New York, NY 10004. Thank you for your generous support.
Connect
Find out instantly about the latest in ALS research,
advocacy efforts, special events, and patient services. Additionally, if you or
a loved one have a blog about living with ALS, please let us know. Stay connected.
You can find our chapter on many social media websites: Facebook | Twitter | ALS Blog | YouTube | LinkedIn. Find our Walk to Defeat ALS department on social media too: Walk Facebook Page | Walk Twitter.
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