If golf is your game then we have plenty for you to do in September! On Monday, September 9th, the 4th Annual Joe Pettinato Golf Classic will be held at Suneagles Golf Club in Eatontown, NJ.
Next up to tee-off is the 3rd Annual All Fore ALS Charity Golf Outing on Monday, September 16th at Ramsey Golf and Country Club in Ramsey, NJ.
For information on foursomes or sponsorships, please contact Kristen Cocoman at firstname.lastname@example.org or (212) 619-1400.
Employee Giving Made Easy
Are you looking for an easy way to help support the ALS Association Greater New York Chapter? Employee giving could be a great option for you and you can probably do it from your desk! Through an employee giving program, you can dedicate pre-tax money to the Chapter and support the ALS research and the thousands we serve each year. To designate our Chapter, you may use the following codes:
• Combined Federal Campaign (CFC): 56276
• State Employees Federated Appeal (SEFA): 99900019
• Combined Municipal Campaign (CMC): 1741
• United Way: The ALS Association Greater New York Chapter
If you're unsure if your place of work participates in this type of program, please contact Loren Domilici at (212) 720-3060 or email@example.com for assistance.
Every Fall, the fashion world awaits the highly anticipated ‘September Issue’ of Vogue magazine one of the largest publications showcasing the works of some of the most iconic designers in international fashion. The production of this one issue has been the subject of film and countless interviews.
For the ‘September Issue’ of the Chapter’s Monthly Update, we will also take a brief look at fashion and ALS. It can be many things, including an incredible statement of solidarity and awareness, as well as a functional component that can actually assist patients living with ALS and their caregivers in their day-to-day lives.
First, the Chapter’s Assistive Technology Specialist answers questions about clothing for comfort and ease of care, for both ALS patients and their caregivers.
Second, take a look at some of the wonderful Spring fashions we had at the five Walks to Defeat ALS earlier this year.
My wife has ALS and she is to the point that she can no longer dress herself. She wears loose fitting clothes to make it easier for me to help her, and take care of her personal needs, however she feels uncomfortable wearing clothes so large. Is there anything I can do or buy to help her that would make her feel more comfortable?
Phil, Rockland County, NY
There are specialty stores that focus exclusively on garments that allow for easier dressing and can also look nice. As with many forms of Assistive Technology, the assistance it provides is not just for the individual with the disability, but also provides assistance for the caregiver. Performing the fine motor skills needed to use buttons, zippers, and laces, makes dressing increasingly difficult for someone with ALS. However there are clothing options available that eliminate the need for such dexterity.
Adapted clothing may open and close from the side or back, whichever more easily allows for personal care without extensive maneuvering. Velcro offers easier opening/closing on shirts, blouses, pants, and dresses. While the fit of adapted clothing may feel the same to a person with ALS, it can make dressing and undressing easier for caregivers, minimizing the need to lift a patient as much, and thereby minimizing the stress to a caregiver’s back. You can search on the internet for adapted clothing, or contact me if you have any questions.
To ask Ben a question, simply email him at firstname.lastname@example.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.
Walking in Style
The Greater New York Chapter hosts seven Walks to Defeat ALS throughout the region. Thus far five Walks have taken place New York City; Long Branch, NJ; Saddle Brook, NJ; Bridgewater, NJ; and Westchester, NY. At each Walk one team was awarded as having the “Most Creative T-shirt”. Here are those amazing fashions:
We look forward to the Long Island Walk to Defeat ALS, the largest Walk in the nation, on Sunday, September 22nd and the Hudson Valley Walk to Defeat ALS on Sunday, October 20th. For more details on those Walks, visit www.ALSWALKS.org.
Clearly, fashion in the ALS community has both form and function, as well as style and practicality. We look forward to seeing the great Fall fashions at the Long Island and Hudson Valley Walks!
TEAM ALS Running 4 A Cure
With the Marathon just two months away, Team ALS is kicking it in to high gear with intense training and fundraising. If you would like to learn more about this year's team, please visit our 2013 team page at: www.bit.ly/TEAMALS2013
Our Marathon spots are officially sold-out but if you have an entry and would like to join Team ALS for the ING New York City Marathon or at a local race in your area, please contact Kristen Cocoman at: email@example.com. Also, if you can't run in the marathon we will be cheering on the Team from the race route, come rain or shine. Stay tuned for those details.
Food & Culture
The month of September coincides with many cultural events, food celebrations, and religious observances. September marks National Honey Month, National Chicken Month, and National Rice Month. It is also the month of two major Jewish holidays, as well as National Hispanic Heritage Month.
Each of these moments are often celebrated with good food. As a nutritionist for ALS patients, it is critical that foods are not only nutritious and tasty, but also easy to swallow. Here are some easy recipes to commemorate these yummy moments:
National Honey Month Honey, makes me think of the Jewish New Year, Rosh Hashanah. One of the traditions is to dip apples in honey to represent a Sweet New Year. Special food customs and recipes for Rosh Hashanah have developed over many centuries, yet only in recent years have we come to fully appreciate their goodness. For example, while the pomegranate is mentioned many times in the torah, its health benefits of vitamin C, B, Potassium, fiber and antioxidants were only recently discovered. Click here for some traditional Rosh Hashanah recipes modified to make them high in calories and easy to swallow homemade applesauce, pomegranate smoothie, and noodle kugel. Click here for recipies (PDF).
September 15 to October 15 is Hispanic Heritage Month and is dedicated to recognizing the contributions of Hispanics/Latinos in America. One indelible contribution has been to the American palate. Food traditions from South and Central America have become common place on the American dining table. What better way to celebrate National Chicken Month, National Rice Month, and Hispanic Heritage Month, than with Arroz con Pollo (rice with chicken). Check out this recipe courtesy of Epicurious.com. Also, to wash down this delicacy, enjoy a ‘mock margarita,’ courtesy of Recipe.com. Click here for recipies (PDF).
Each recipe can be modified to make it easier to tolerate swallowing by adding extra gravy/sauce for moisture and then blenderizing it to the consistency that is easier to consume. I hope you enjoy these festive foods.
By Ilene Kapelner, Registered Dietician, ALSA Center at Beth Israel Medical Center
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 firstname.lastname@example.org. If you live in New Jersey contact Debbie Schlossberg at (732) 710-8832 or email@example.com.
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 is September 10th. Meeting will be held at 252 West 37th Street on the 17th floor. Newcomers welcome.
For information about the ALS Association's Young Professionals Group, please click here or contact Loren Domilici at firstname.lastname@example.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
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 email@example.com 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: firstname.lastname@example.org for New York, or Debbie Schlossberg at (732) 710-8832 or email: email@example.com 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 firstname.lastname@example.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.
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