ALS Awareness Month

Throughout the month of May we commemorate ALS Awareness Month. This month will be full of events, media, and a number of other awareness raising activities to bring attention to this disease that continues to devastatingly impact all of our lives.

To kick Awareness Month into high gear, the Walk to Defeat ALS season begins in earnest on May 4th with our New York City Walk and the Long Branch, New Jersey Walk on May 19th. In addition, on May 9th our Greater New York ALS Advocates take to Capitol Hill for National ALS Advocacy Day, one of the Association's signature events.

Check out the Chapter's social media every day this month for fun, exciting, and meaningful ALS Awareness Month activities, stories, and updates.

May Calender of Events

5/4 - New York City Walk to Defeat ALS - Pier 45.

5/5 - ALS Awareness Day with Minor League Baseball's Somerset Patriots - Join us at TD Bank Ballpark for the Somerset (NJ) Patriots' First Annual ALS Awareness Day. For details contact Kristen Cocoman at cocoman@als-ny.org or (212) 720-3048.

5/9 - National ALS Advocacy Day - It's not too late to join us in Washington, DC for the day to meet with Senators & Representatives on Capitol Hill advocating for greater funding for ALS research and much more. To sign up or for details contact Daryl Cochrane at dcochrane@als-ny.org or (212) 720-3051 by Monday, May 6th.

5/16 - Sip, Shop, & Support - J.Mclaughlin hosts this evening of refreshments and shopping. Enjoy the new Summer Collection at the Madison Avenue location and 15% of sales will be donated to the Chapter. Click here for your invitation. Contact Regina Ackley at Ackley@als-ny.org or (212) 720-3047 for details.

5/19 - Long Branch, NJ Walk to Defeat ALS - Along The Promenade.

Throughout ALS Awareness Month The Greater New York Chapter works to raise awareness for the disease, and highlight personal stories of those impacted by ALS. Also, as is tradition, the second Sunday of May marks Mother's Day. In this ALS Awareness Month issue of the Chapter’s Monthly Update, two people share their journey with ALS. One is a story of a mother living with ALS and how it has touched the lives of her three sons.

Another, is a story from the perspective of an 11-year old boy whose mother has been living with ALS nearly his entire life. Living with and coping with ALS is never easy, but lives are forever shaped by this disease and our efforts to move forward with hope continue. Happy Mother's Day from your friends at the ALS Association Greater New York Chapter.

It's Complicated to Have a Mom With ALS
by Christian - Age 11

Christian with his Mom.

I've come to realize that my mom tries to be a normal mom. My mom has ALS, known as Lou Gehrig's disease. ALS stands for Amyotrophic Lateral Sclerosis. It is when someone gets paralyzed and disabled. It's complicated to have a mom with ALS because my mom needs help, she uses a wheel chair, and has a Tobii and trach.

First of all, my mom has a wheel chair because she cannot walk. Sometimes I get rides and it is fun. It is always fun to get rides when I have a long day. I would climb on the back of the wheel chair and she would drive. You always have to look out in case if she runs over you so look out!!!! Because it really, really hurts!!!! The wheelchair helps her get around the house. If she did not have it, she could not get around the house and she could not move anymore.

Also, she needs lots of help since she cannot move anymore. We need to help her get in the car and go to the bathroom. I help my mom. For example, I have to change the battery and get a good one from the charger, but I like helping her. Maria is my babysitter. She helps me get ready in the morning and takes me to school. She makes sure everything is done and she helps me survive.

Furthermore, my mom has a trach to breathe and she has the Tobii since she cannot talk. The Tobii is a computer that talks for her. I always thought her Tobii would repeat the word on and on when she would get mad. It never happened, but I am glad so she can talk. She needs lots of stuff. If she did not have any of this, she would die.

It's complicated to have a mom with ALS because she needs lots of help. I realized that everyone is sad when family is sick like my mom. I used to think my mom was mean to me, but now I think she is mad over ALS. Now I know she is nice and a good mom.

Christian resides in New Providence, NJ with his parents. His mother has been living with ALS for nine years, since Christian was two years old.

Go Team!
by Nell Tredway Hardy

Nell Hardy and her three sons at a 2010 ceremony where she was one of several recipients of the Spirit of Courage Award given by the Sisters of St. Joseph in Erie, PA. From left, her sons are: Emmet, Connor, and Brendan.

It's been four years this month since my ALS diagnosis. In that time I've witnessed extraordinary changes in myself, friends and family, and particularly my three sons.

A few years ago, at the end of my driving, I dropped my youngest son Emmet, now 19, at school. Before we rolled to a stop, he quickly took down the handicap placard from the rearview mirror. “I don't want people asking me questions,” he said softly. That same boy now is never far from my side or my heart. He kicks the disease aside as he leans in for a kiss, always, before going out the door.

His older brothers love me day to day in different ways. My oldest, Brendan, 23, squeezes my arm gruffly every time he passes me. A few years ago he walked two or three paces behind me when we were out. Now we take in concerts, movies and golf tournaments together.

My middle boy, Connor, 21, loves me fiercely from afar. He's always been the toughest to pin down. My illness may be the impetus he needs to cross over and give of himself.

I've learned who are faithful and who are frightened. When my own fears occasionally become too big to drag around, I adopt “act as if.” By the time I've put on a smile, warmed up and tamped down any impatience or irritation, I'm ready to take on the daily art of living.

Over the past years I’ve gotten to say no without apologies. I can decide who I want to be around and I don’t need to explain. How freeing! Besides my boys, so many love me unconditionally—from my beloved sister, my brothers, to my faithful nurses and friends. They give me the courage to say yes in a world that says no.

Through it all, the ALS Association—both the Greater New York Chapter and the Western Pennsylvania Chapter—has been with me, helping in any way needed. For anyone out there who donates to find a cure, thank you! This is about living, taking the next step, beating the odds. I intend to be around for awhile so let's do it together! The cure is closer than ever.

Nell Tredway Hardy is living with ALS and is Co-Captain of the Friends of Nell team. She, along with her sister and Co-Captain Caroline Tredway, and other team members will be participating in their fourth Walk to Defeat ALS in Manhattan on May 4th.

For information about our Children & Teens Program, please contact Adele Marano, LCSW at (212) 720-3059 or Marano@als-ny.org.

May Support Groups

SADDLE BROOK / NORTHERN NJ
Thursday, May 2nd
7 pm to 8:30 pm
Kessler Institute for Rehabilitation
300 Market St.
Saddle Brook, NJ 
Contact: Debbie Schlossberg, LMSW
and Mary Ann Mertz, RN,
(732) 710-8832
Topic: Open Discussion

NASSAU COUNTY, NY
Sunday, May 5th
2 pm to 4 pm
North Shore LIJ - Plainview Hospital
888 Old Country Road, Plainview (Downstairs)
Contact: Theresa Imperato, RN, 
(516) 946-5467
and Cindy Keyser-Posner, LMSW
(631) 416-2767
Topic: Open Discussion

SUFFOLK COUNTY, NY
Tuesday, May 7th 
NOTE: change of location for May only
The Three Village Club Clubhouse
42 Varsity Blvd., Setauket, (Wheelchair accessible)
Gate Code to development is #650
RSVP to Patti Simpson (Kathy Rogers' sister)
at Laxmomthree@gmail.com or
call/text (516) 457-9422.
Topic: Open Discussion & Dinner
Please RSVP by Monday, May 6th.

HUDSON VALLEY, NY
Tuesday, May 7th
6:30 pm to 8:30 pm
Vassar Bros. Medical Mall
Ambulatory Surgery Center
Bldg C, 3rd floor
200 Westage Business Center
Fishkill, NY
Contact: Helen Mayer, RN,
(845) 520-0952
Speaker: Jody Wiesel, PhD
Topic: CPR Training & Open Discussion

NEW BRUNSWICK / CENTRAL NJ
Saturday, May 18th
1pm to 3 pm
Robert Wood Johnson University Hospital
Medical Education Bldg,
Room 108A
180 Somerset Street
Follow signs to meeting 
Contact: Debbie Schlossberg, LMSW
and Mary Ann Mertz, RN,
(732) 710-8832
Topic: Open Discussion

MANHATTAN, NY
Tuesday, May 21st
6 pm to 8 pm
Phillips Ambulatory Care Center (Beth Israel)
10 Union Square East
(b/w 14th & 15th Streets)
Neurology Dept. - 5th Floor Conf. Room
Contact: Jody Wiesel, PhD,
(917) 699-9751
Topic: Open Discussion

New Support Group
Beginning this Summer the Greater New York Chapter will start a monthly support group in Westchester County. Date, time, and location to be announced in future Monthly Updates. Stay tuned for more details.

TELEPHONE SUPPORT GROUPS
Caregivers: Fridays - 11am to 12pm
Patients: Fridays - 3pm to 4pm
Contact: Sue Zimmerman at
(212) 720-3050
Starting May 3rd telephone support groups will meet bi-weekly through the summer.

For more information about our Support Groups go to the Chapter website: www.als-ny.org, Patient Services section or call (212) 619-1400.

NEW TELEPHONE SUPPORT GROUP:
The Chapter will soon be starting a telephone support group for adult children caregivers of ALS patients. This group has specific issues that can be understood by others "in the same boat" such as working and raising children, as well as caring for a parent with ALS. This support group will meet weekly via telephone for an hour-long conversation, during which adult children caregivers can feel free to share their experiences. If interested please contact Kunbi Oluwasusi, SWI at (212) 720-3045 or koluwasusi@als-ny.org.

One Year Anniversary Column

I have ALS. I am still able to get around fairly well, however, my speech has become increasingly difficult to understand, especially for those unfamiliar with me. I have good hand function, though texting with small buttons on a cell phone is not consistent and writing will obviously not work when communicating via phone. Is there anything that would help me communicate over the phone better?

- Barbara - Putnam County, NY

That is a fairly common question Barbara, particularly for those with the bulbar form of ALS. There are two services that may interest you and could prove very helpful. One is called Speech to Speech and the other is called Hearing Carryover Relay. Both are free phone services. In New York or New Jersey, simply dial 711, and you are connected to an operator who will act as interpreter.

In Speech to Speech, the operator works with the caller to understand what they are saying. The operator then dials the number the caller wants to speak to, and the operator translates for the caller. This call can take some time, but the operators are trained to ask questions of the caller to assist with clarification of what they are saying. In NY or NJ, visit www.speechtospeech.org to learn more.

In a Hearing Carryover call, you would need a TTY connected to your standard home telephone line. A TTY is a phone sized typing device, often associated with the deaf and hearing impaired, that essentially 'texts' over a standard phone line. (There are also ways to set this up on your computer or some cell phones.) You would then type what you want to say to the 711 operator, and the operator would call the person you want to speak with. The person receiving the call is connected directly to you, so you would also hear that part of the conversation. You could then go back and forth with the operator speaking what you type and you hearing the person you're calling. The operator translates everything word for word and all conversations are strictly confidential.

You can also receive phone calls through the same service. Any caller can dial 711, speak to the operator, who would then dial your number so you can use the TTY to 'speak.' There are 800 numbers if the 711 does not work on your phone. To learn more, visit www.nyrelay.com (for New York State residents) or www.njrelay.com (for New Jersey State residents).

- Ben

As was mentioned, this is my one year anniversary of writing this monthly column. I receive so many questions each week about situations where assistive technology, durable medical equipment, or simple home modifications can significantly and positively impact the lives of people with ALS and their families.

I want to thank everyone who has written or called in with a question over the last year. I hope you find my answers helpful and insightful and that you're able to adapt them to fit your day-to-day lives. I look forward to getting your questions in the year to come and wish you all the best.

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.

ALS Awareness All Year Round

May is ALS Awareness month! Your gift helps us provide vital services to our PALS and caregivers. Your impact can go well beyond May though, and you can commit to donating to the ALS Association Greater New York Chapter each month of the year. Please consider donating monthly to ensure we can continue to work to improve the quality of life for people with ALS throughout May and every day of the year. For more information, please contact Loren Domilici at (212) 720-3060 or visit www.als-ny.org.

J.McLaughlin Shopping Event

Join The ALS Association Greater New York Chapter and J.McLaughlin at their 1311 Madison Avenue store (b/w East 92nd & 93rd Streets) from 6pm to 8pm, on Thursday, May 16th. Enjoy wine & cheese at this in-store event while you shop for classic, American-made, men’s and women’s clothing and accessories. With 15% of proceeds from the evening benefiting our Chapter, start your Summer shopping with confidence that you are supporting a great cause. Click here for your invitation. Contact Regina Ackley at Ackley@als-ny.org or (212) 720-3047 for details.

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.

Sponsor Highlight

The Greater NY Chapter welcomes back Diamond Foods, Inc. as a Presenting Sponsor of the 2013 Walk to Defeat ALS Program!

Diamond Foods is an innovative premium snack food and culinary nut company focused on building and energizing brands. We are thrilled to have Diamond Foods as a long-time supporter and are grateful for all they do in the fights against ALS.

The Chapter's relationship with Diamond Foods has been spearheaded by Long Branch Walk Chair and Diamond Foods National Account Manager, Ellen Compesi. Ellen and her family Walk with The Joe Pettinato Team in memory of Ellen's father.

Thank you Ellen and Diamond Foods.

The YPG NYC Walk Team

The ALS Association Greater New York Chapter is proud to have the support and passion of the Young Professional Group (YPG). This group is made up of young professionals, in their 20s and 30s, who have a personal connection with ALS. They host multiple events throughout the year and are dedicated to raising funds and awareness to win the fight against ALS.

The YPG will once again be walking at the New York City Walk to Defeat ALS. They have raised over $100,000 since they first began walking in 2008. We look forward to another great Walk year with the YPG!

If you or someone you know would like to get involved, please contact Loren Domilici or Rebecca Silver Fisher at (212) 619-1400. The next YPG meeting will be on May 22nd. To learn more, visit the website or check them out on Facebook.

Ask the Experts ALS Research Symposium

On April 14th, our Chapter hosted an "Ask the Experts" ALS Research Symposium at the beautiful campus of Cold Spring Harbor Laboratory on Long Island. We were happy to welcome 16 PALS, over 50 more friends and family members, as well as Research Council members to this informative afternoon focused on the latest in ALS research.

Chapter Board Member Kevin Glassman, MD opened the symposium and Dr. Lucie Bruijn, The ALS Association's Chief Scientist, and Dr. Martin Turner from the University of Oxford discussed the importance of biomarkers, stem cell research, and early detection of the disease in helping them better understand ALS and find more effective treatments.

Thank you to everyone who attended! We look forward to hosting another research symposium in the future.

A Cure Begins With You

Become a member of The ALS Association Greater New York Chapter Research Council. The Research Council is an annual giving program that acknowledges the important support of individuals who make gifts of $1,000 or more annually to research.

Members of the Greater New York Chapter Research Council play an important role in funding aggressive, cutting-edge ALS research. This year you can help find a cure for ALS.

For more information, please contact Loren Domilici, Development Manager at (212) 720-3060 or ldomilici@als-ny.org.

Tell Your Story

May is ALS Awareness Month and there is no better tool for awareness than telling your ALS story. Take some time out of your day and give voice to that story. Most people know who Lou Gehrig was, but they should also know about the life of your dad, your mom, your sister, your brother, your aunt, uncle or cousin, your neighbor, your colleague, and you.

One of the best ways to make your ALS story known is to write your community newspaper. Call them or go online and see how to submit a Letter to the Editor or an Op-Ed piece. Throughout the Greater New York region, there are a number of online community news outlets, including Patch.com and DNAinfo.com. Look for the neighborhood or town nearest you. Write to the editor and tell them about ALS and how it has impacted you and your family.

For assistance or questions, please contact our Communications Manager Daryl Cochrane and he’ll be happy to help dcochrane@als-ny.org or (212) 720-3051. ALS awareness begins with you.

YPG Networking to Defeat ALS

The Greater New York Chapter’s Young Professionals Group hosted their first Networking Happy Hour event on April 23rd at The Ainsworth Lounge in Manhattan. An energetic crowd of nearly 50 young professionals from various career backgrounds attended, all with a mission to defeat ALS . This was a great event for everyone to get to know each other as well as learn more about the Chapter and the upcoming NYC Walk to Defeat ALS. We are looking forward to more of these events throughout the year! Stay tuned.

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.

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.

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.

The 2013 ALS Advocacy Day & Public Policy Conference will take place May 8-10 in Washington, DC. Registration begins on Monday, February 11th. We hope to see you at Advocacy Day!

If you're interested in joining our advocacy efforts, please contact Daryl Cochrane at dcochrane@als-ny.org or (212) 720-3051.

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.

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.

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.