June 2016 Monthly Update | The ALS Association Greater New York Chapter


ALS Banner - Fighting on every front to improve living with ALS.

June 2016

[donate now] [register] [contact us] [tell a friend] [visit our website]

Icon Facebook Icon Twitter Icon Linkedin Icon Instagram Icon Youtube

Team WTF Walks to
Win The Fight!

Steve Marino's sister, Lorraine Darienzo, said that Steve never lost his sense of humor even after he was diagnosed with ALS. That's why he'd appreciate the name that his friends and family picked for their Westchester Walk to Defeat ALS team: Win The Fight, or as they like to abbreviate it, WTF. It's a phrase Steve would often mouth when he got frustrated trying to communicate his needs after he lost his voice.

Steve and Janet Marino. Photo courtesy of Janet Marino.

A Bronx, NY native who worked as an auditor for Liberty Mutual, Steve married his childhood sweetheart, Janet. The couple have an enormous network of friends who helped the family during his illness and continue to show their support through Team WTF. "It takes a village to take care of someone with ALS," said Lorraine. That group of friends and relatives return every year to make Team WTF one of the biggest and most successful Walk to Defeat ALS teams in Westchester.

Lorraine lives in California but is still able to serve as team captain. She organizes Team WTF with the help of co-captain, Robert Caccavo, Steve's high school buddy and her older brother Jack, who lives in Connecticut. "Lorraine is a shining example of a team captain and an amazing advocate for the Walks," said Brett Murphy, Manager of Fundraising and Special Events for The Chapter.

The generosity of their friends has helped propel Team WTF to become the top fundraising team at the Westchester Walk to Defeat ALS for the past three years, raising over $100,000 in total. More than a hundred people walk with them every year. Lorraine attributes some of that success to the support she has received from the Chapter's Walk Department in setting up the team’s Walk fundraising page. "The people who work there are wonderful," said Lorraine who admits she isn't technically savvy. "I feel comfortable calling them for anything."

Steve, who died in 2012 at 55-years-old, was an athlete who excelled at a variety of sports. Watching him weaken from ALS was one of the most difficult parts of the disease for his family. That has become the driving force of Team WTF to continue to raise money for ALS patients. "We don't want anyone to go through what we went through," Lorraine said.

To join a Walk to Defeat ALS go to www.alswalks.org or Linda Berman, Senior Walk Program Manager at (212) 720-3042 or lberman@als-ny.org.



2016 Walk Dates

Register at www.alswalks.org

North Jersey -   Sunday, June 5th
Westchester, NY -   Sunday, June 26th
Long Island -   Saturday, Sept. 17th
Central Jersey -   Sunday, Oct. 9th
Hudson Valley, NY -   Sunday, Oct. 16th

Volunteers Needed!

We are currently in need of volunteers for the North Jersey and Westchester Walks. Volunteers help out between the hours of 8AM and 1PM. If you have any questions or are interested in volunteering on Walk Day, contact Reagan Swaine at rswaine@als-ny.org.


June Events

6/5 - Fire for Life – 9 AM-12 PM at the Reebok CrossFit 5th Avenue | More information can be found here. For questions, contact Reagan Swaine at rswaine@als-ny.org
6/12 - New Amsterdam City Swim – For more information, contact Kristen Cocoman at Cocoman@als-ny.org
6/15 - Flint Sprint – 6:30 PM at Eisenhower Park | For more information, contact Kristen Cocoman at Cocoman@als-ny.org
6/28 - ALS Asssociation Chief Scientist Lucie Bruijn, PhD, MBA will speak at The New York Genome Center – 6:30 PM. Topic: Towards therapies for ALS: How ALS Association funded research can impact progress | Event is free but registration is required. Click here to register.

June Support Groups

NASSAU COUNTY, NY
Sunday, June 5th - 2 to 4 pm
Northwell Health*- Plainview Hospital
*formerly North Shore University Hospital
888 Old Country Road
Plainview, NY 11803
(Downstairs)
Contacts: : Cindy Keyser-Posner, LMSW, (631) 416-2767
Theresa Imperato, RN,
(516) 946-5467
Topic: Open Discussion
Next month: No Meeting due to Holiday Weekend

LOWER HUDSON VALLEY
Tuesday, June 7th - 6 to 8 pm
Ambulatory Surgery Center
Building C, 1st Floor, Suite 130
200 Westage Business Center
Fishkill, NY 12524
Contacts: Helen Mayer, RN,
(845) 520-0952
Nancy Brenner, LCSW,
(914) 406-3513
Topic: Ask the Doc & Current ALS Research
Speaker: Matthew Harms, M.D., Asst. Professor of Neurology, Columbia University Medical Center
Next support group: July 5th

SUFFOLK COUNTY, NY
Tuesday, June 7th - 6 to 8 pm
Stony Brook University,
Dept. of Neurology
179 N. Belle Meade Road
East Setauket, NY 11733
Contacts: : Cindy Keyser-Posner, LMSW, (631) 416-2767
Theresa Imperato, RN,
(516) 946-5467
Topic: Open Discussion
Next support group: July 5th

NORTHERN NJ
Thursday, June 2nd - 7 to 9 pm
Kessler Institute for Rehabilitation
300 Market Street
Saddle Brook, NJ 07663
Contacts: Debbie Schlossberg, LMSW, (732) 710-8832
Mary Ann Mertz, RN,
(908) 552-5573
Topic: Open Discussion
Next support group: July 7th

WESTCHESTER, NY
Tuesday, June 14th - 6 to 8 pm
Burke Rehabilitation Center
785 Mamaroneck Avenue
Building 7
White Plains, NY 10601
Contacts: Helen Mayer, RN,
(845) 520-0952
Nancy Brenner, LCSW,
(914) 406-3513
Topic: Ask the Doc & Current ALS Research
Speaker: Matthew Harms, M.D., Asst. Professor of Neurology, Columbia University Medical Center
Next support group: July 12th

MANHATTAN, NY
Tuesday, June 21st - 6 to 8 pm
Mt. Sinai Beth Israel Hospital
Phillips Ambulatory Care Center
10 Union Square East
(b/w 14th & 15th Sts.)
New York, NY 10003
Neurology Department
5th Floor Conference Room
Contact: Jody Wiesel, PhD,
(917) 699-9751
Topic: Practical Tips for PALS from an Occupational Therapist
Speaker: Gioia Ciani, OTR/L, OTD Next support group: July 19th

CENTRAL NJ
Sat., June 18th - 1:30 to 3:30 pm
Robert Wood Johnson
Fitness & Wellness Center
100 Kirkpatrick Street
New Brunswick, NJ 08901
Level 2 Community Education Room
Contacts: Debbie Schlossberg, LMSW, (732) 710-8832
Mary Ann Mertz, RN,
(908) 552-5573
Topic: Open Discussion
Next support group: July 16th

TELEPHONE SUPPORT GROUPS
Patient group:
Every Friday - 2:30 to 3:30 pm
Caregivers group:
Every Friday - 4 to 5 pm
Topics include: Open discussions or Meditation and Guided Imagery for Stress Reduction.
A new telephone support group has been formed for patients newly diagnosed with ALS. Please call for more info.
Contact: Sue Zimmerman, LCSW, (212) 720-3050


Lucie Bruijn, PhD, MBA
ALS Association

Towards therapies for ALS: How ALS Association funded research can impact progress

Tuesday, June 28, 2016
6:30 p.m. – 8:30 p.m.

The New York Genome Center
101 Avenue of the Americas
(bet. Grand & Watts Streets), NYC

Meet the speaker, networking and
refreshments to follow.

Register Here

Bio: Lucie Bruijn, PhD, joined The ALS Association in January 2001 and is currently the Chief Scientist. Prior to that Dr. Bruijn led a team at Bristol Myers Squibb developing in vitro and in vivo model systems for neurodegenerative disease. Read more.

Talk Abstract: Over the past several years thanks to increased investment and advances in technology, gene discovery for ALS has grown exponentially and with this the opportunities to develop therapies for this devastating disease. Read more.

The Evening Talks Series is sponsored by The Pyewacket Fund of the New York Community Trust.


New C9orf72 Mouse Models Show Neurodegeneration
from Most Common Genetic Cause of ALS

Two independent research studies both funded by The ALS Association, including principal investigator Laura Ranum, Ph.D., of the University of Florida in Gainesville and the other study led by Don Cleveland, Ph.D., of University of California San Diego in San Diego and Clotilde Lagier-Tourenne, M.D., Ph.D., of Massachusetts General Hospital in Boston, have developed new mouse models of the C9orf72 mutation that show neurodegeneration and motor and cognitive deficits reminiscent of amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD). In addition, one group showed that these effects could be ameliorated in mice by antisense therapy against the mutant gene.

“These studies represent significant progress in understanding the consequences of the C9orf72 gene mutation and in developing a therapy against it,” said Lucie Bruijn, Ph.D., M.B.A., Chief Scientist for The ALS Association. To read the full story click here.


Sign Up For The National ALS Registry

The Federal government has taken a major step in the fight against Lou Gehrig’s Disease as the Agency for Toxic Substances and Disease Registry (ATSDR) announced the full implementation of the National ALS Registry. People living with Amyotrophic Lateral Sclerosis (Lou Gehrig’s Disease) may self enroll in the Registry via a secure online web portal at the Centers for Disease Control and Prevention: www.cdc.gov/als.

For more about the ALS Registry, contact Christine Dunn in the Chapter office at (212) 720-3044 or dunn@als-ny.org. Chris can also help you with your enrollment.


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 a good book to you. Contact Christine Dunn at (212) 720- 3044 or dunn@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.

To find out about the next general meeting of the Young Professionals Group please email alsypg@gmail.com. For information about the ALS Association's Young Professionals Group, contact Brett Murphy at (212) 720-3052 or bmurphy@als-ny.org. Visit the YPG website here.


#Challenge ALS

Help Create A World Without ALS. Create a world without ALS by getting involved with The ALS Association Greater New York Chapter. Whether joining the Walk to Defeat ALS®, volunteering your time to support the ALS community, or sharing your story to honor our loved ones and spread awareness, there are plenty of ways to join the fight! Every action you take to Challenge ALS furthers our mission and accelerates finding a treatment and a cure for this devastating disease. For more information contact Kristen Cocoman at (212) 720-3048 or email cocoman@als-ny.org.

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 Jeanne Traugot, Director of Development, at (212) 720-3051 or jtraugot@als-ny.org.

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 movie together or reading, or even helping with some household chores.

If you are looking for a way to get involved please click here to learn how you can help people with ALS. You can also call Christine Dunn at (212) 720-3044 or email: dunn@als-ny.org.

Donate

Make a generous donation to find a cure, fund life saving research or to provide much needed equipment and services. To make a donation online, please click here or contact Jeanne Traugot, Director of Development, at (212) 720-3051 or jtraugot@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.

Tribute

Our online Tribute Wall offers individuals and families a way to honor and remember those whose lives have been affected by ALS. Through this online collection of photos, messages, and notes we hope to share the stories of the hundreds of people in our region with Lou Gehrig's disease. If you would like to share a message and a photo, please email your submission of the name of the person and a brief paragraph of no more 200 characters along with a photograph to tribute@als-ny.org.

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 social media: Facebook | Twitter | ALS Blog | YouTube | LinkedIn.

Find our Walk to Defeat ALS on social media too: Walk Facebook Page | Walk Twitter.

Learn more:  Research | Blog | How to Help 


To unsubscribe to this newsletter change your email preferences: click here.