Research Begins with You
By Dorothy Smith - Edison, NJ
My name is Dorothy Smith and I was diagnosed with Amyotrophic Lateral Sclerosis (ALS) in June 2010. I would like to share with you my recent experience with the Northeast ALS Consortium (NEALS), and specifically my attendance at the 2nd Annual ALS Clinical Research Learning Institute (CRLI) in Clearwater, Florida in late October. But first let me tell you a bit about myself.
I am a wife, mother and grandmother. Prior to my diagnosis, I had a rewarding career, with a daily two hour commute to Manhattan. I am now confined to a wheelchair. With a life expectancy of two to five years for an ALS patient, it is essential that I share my experience with you and encourage you to help find a cure, while I still have time. I participated in one research study for almost two years. That study has ended, with results to be published this month. I am now actively seeking another study in which to participate. Even if it does not prolong my life expectancy, it keeps me active, interested and in a positive frame of mind.
NEALS is a non-profit organization dedicated to translating scientific advances into new treatments for people with ALS. NEALS functions as an academic research consortium, a contracted research organization, and a resource tool for the ALS community. Please visit their website at alsconsortium.org for the latest research information.
In the spring of 2012, the Chief Neurologists of the ALS clinics were asked to submit proposals for candidates to be ALS Research Ambassadors. My physician, Dr. Jerome Belsh, Medical Director of the ALS Association Center of Excellence at Robert Wood Johnson University Hospital, nominated my husband and me and we were subsequently selected to participate.
The goal was to teach the attendees about the research process and trial design, how to critique a scientific publication, the ALS study pipeline, barriers to success and how to overcome these barriers. It was also an opportunity to meet and speak with key researchers and active PALS from all over the country.
If you have ever attended an ALS webinar or read research articles, you may recognize some of these names (to name a few - Jeremy Shefner, Merit Cudkowicz, Richard Bedlack). I felt like I was meeting celebrities! There were formal presentations, but each researcher made time for individual conversations and to answer questions.
• Less than 10% of all patients diagnosed with ALS ever participate in a research study. Lack of participation increases research cost and delays progress in finding a cure.
• Only 50% of patients diagnosed with ALS attend a multidisciplinary ALS Clinic, so some may not be aware of studies.
• By law, you must be told what drug you may be getting, all known risks and expected results. The risks cannot be concealed or minimized.
• Drugs will always be tested in a lab and on similar animals before human tests.
• You can withdraw from a study at will, under no obligation, at any time.
• You will never be denied knowledge of beneficial medical care to keep you in a study.
• If you suspect that you may be in the placebo group, don’t feel bad. Since a cure has not yet been identified, historical review of all past studies has shown that placebo groups fare just as well! It is a required part of every study and by participating, you have the added advantage of additional free medical care, as well as positive mental attitude.
• Every study has basic minimum health requirements, especially breathing capacity, so it is important to volunteer while you are healthy enough to participate.
If you would like additional information about how to find out about studies or how to volunteer, please feel free to contact me at firstname.lastname@example.org.
I should mention that all travel arrangements for PALS and caregivers were made by the program coordinator and paid for by NEALS. Thank you very much to NEALS for a wonderful trip! All the attendees had to do was show up, absorb the wealth of knowledge presented and share with others, which I hope you got a sense of here. If you are interested in applying to participate in the conference next year, please call (877) 458-0631 or email email@example.com for additional information.
This is your life and your health. Without legitimate research programs they will never find a cure.
‘Tis the Holiday Season, and as such it is also a time for charity and giving. Recently the Chapter has partnered with two generous companies Hale and Hearty Soups and J. McLaughlin Classic American Apparel Company - who have stepped up in the fight against ALS. We hope you will continue to support the ALS Association by participating in these two events!
About Hale & Hearty Chef Series: The good people of Hale and Hearty Soup are partnering with six celebrated New York City chefs to promote community and charity through a six-week Chef Series. Each chef has created a unique soup recipe to be sold in all of Hale and Hearty’s 28 locations, with proceeds from the sale of that soup going to the charity of that chef’s choice. THIS WEEK November 26th through December 2nd, Chef Chris Bradley, Executive Chef at Untitled at the Whitney Museum, will be featured and he has chosen our Chapter as his charity. Head down to the Hale and Hearty’s location nearest you. TODAY and help defeat ALS one spoonful at a time.
About J. McLaughlin Holiday Shopping Night for ALS: Start your holiday shopping early! Join The ALS Association Greater New York Chapter and J. McLaughlin at their 1311 Madison Avenue store (between East 92nd and 93rd Streets) on Wednesday, December 5th from 6pm to 8:30 pm. Enjoy seasonal refreshments 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 holiday shopping with confidence that you are supporting a great cause.
Children & Teens Day
The ALS Association Greater New York Chapter presents our 3rd Annual Children & Teens Day! This fun and meaningful event will be held on Saturday, December 15, 2012 from 11:30 AM - 3:00 PM at Little Shop of Crafts.
The event is for children and teens, between the ages of 8 and 18, who have a parent or other relative living with ALS. We will be painting pottery and enjoying a lunch of pizza and cupcakes! Special thanks to Chapter Board member Marilyn Safenowitz for her generosity to make this day happen.
For additional information, or to register your children, please contact Susan Zimmerman, LCSW at (212) 720-3050, Jennifer Delgado, SWI at (212) 720-3053, or Kunbi Oluwasusi, SWI at (212) 720-3045. Please RSVP by Wednesday, 12/12/12 to register. We hope your children can join us! HAPPY HOLIDAYS!
What can I get the PALS or caregiver in my life for the holidays?
With the holiday season upon us, this is a time of giving and a time for thanks. And the question of what to give the PALS or caregiver is a popular question this time of year. With that in mind, there are a few simple items that one might consider as a gift, that are affordable, readily available, and will make life easier for the PALS or caregiver in your life. As with any piece of equipment, there is no ‘one size fits all’, and some equipment may be right for some and not others.
Stylus - The stylus is a small pen-like shaped tool that can activate an iPad or tablet screen. When someone loses the ability to put enough pressure on the screen with their finger, it can sometimes be compensated for with a stylus. While manually grasping it may not work, the stylus can also be Velcro-ed to the forefinger and extend beyond the end of the finger. This can increase the pressure placed on the screen, thereby activating its usual functions. There is a ‘wrist-cuff’ that can be worn around the palm and wrist. Items such as a fork, or pen, or stylus, can all be attached to the wrist-cuff. By turning the wrist or palm one may be able to replicate the ‘finger push’ with a different movement.
Talking Picture Frames - For someone who has difficulty being understood, simple talking picture frames provide the opportunity to initiate discussion and engage in conversation. The combination of photo images and voice recordings allow for a fuller expression about a particular memory or topic. Such frames are especially great for children and grandchildren, who may find it difficult to relate to someone who has lost their voice. A picture of a child at little league, at graduation, or at a family reunion, can all help tell a story and keep children and adults immersed in conversation. Kids and adults can take turns recording, or have fun recording messages together. A caregiver could even record a different message every time you bring them a new picture. If still capable of speaking, the person with ALS themselves, can record messages or questions in their own voice, allowing the listener to hear that voice, long after their voice has been lost. If you already have a communication device, many of them have the capability to upload photographs and offer the same effect.
Adaptive Clothing - Dressing oneself can become increasingly difficult for those living with ALS. However there are garments that allow for easier dressing and undressing. Velcro is commonly used to make the connections instead of buttons or zippers. Shirts, blouses, pants, and shoes are available in ‘adapted’ versions to make dressing easier for the PALS, as well as other clothing adapted to make it easier for caregivers to assist someone in getting dressed.
These are just a few of the many examples of gifts you can find online or in specialty stores. If you had some specific thoughts about a gift, and whether there is an ‘adapted’ version, please feel free to contact me. Have a very Happy Holiday season!
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.
Season of Giving, Season of Hope
Our Chapter is proud to provide comprehensive services to people with ALS (PALS) throughout the year. These services are instrumental in our fight because ALS never takes a holiday. To continue our efforts, we need your support. Your gift can help support:
• Patient and Family Services for people living with ALS and their families throughout the Greater New York area.
• Research designed to speed therapy development by addressing ALS on all fronts, from basic research to clinical trials.
• Advocacy to increase government funding of research and sponsorship of legislation to make treatments and care accessible and affordable for all PALS.
Your donation allows us to be the constant and reliable support system our PALS and their families need while battling this disease. During this time of giving, please consider making a donation to support our efforts in fighting ALS and finding a cure.
All donations made on or before December 31st are tax deductible for 2012. To donate, contact Loren Domilici at (212) 720-3060 or email: email@example.com.
Walk to Defeat ALS – Amazing Season
Congratulations to the thousands of Walkers who participated in one of this year’s six Walks to Defeat ALS.
With the last Walk of the year complete, the numbers are still being tallied but we are delighted to report that 2012 was a record-breaking year for the Greater New York Chapter Walk Program with over $1.8 million raised and fun was had by all! Your hard work and dedication helped raise funds and awareness for ALS research and patient services.
To view or purchase photos of the 2012 Walks, please click here. They make a great holiday gift! Stay tuned next month for Walk updates for the 2013 Walk Season! In the meantime, follow us on Facebook.
And it’s not too late to donate. With your generosity we can achieve $2 million. Simply click here to contribute.
18th Annual Lou Gehrig Sports Awards Benefit
Congratulations to all of our honorees at last month’s 18th Annual Lou Gehrig Sports Awards Benefit - sports broadcaster and former professional tennis player Mary Carillo, 2012 National League Cy Young Award winner R.A. Dickey & four-time Major League Baseball All-Star shortstop Jose Reyes. The Jacob K. Javits Lifetime Achievement Award was presented to Dr. Tom Maniatis, a renowned ALS researcher and Chair of the Department of Biochemistry and Molecular Biophysics at Columbia University.
November 7th was a spectacular evening to remember, despite a Nor’easter, with hundreds of guests raising over $800,000 for ALS research and patient services.
Special thanks to our Benefit Co-Chairs, our Presenter and Master of Ceremonies – Bob Costas & Jeremy Schaap, the creative team at BBDO, all of our volunteers, and the entire Benefit Committee.
TEAM ALS – Deterred, but Determined
While Hurricane Sandy wreaked havoc on the Tri-State area, leading to the cancellation of the New York City Marathon, it did not dampen the spirits of Team ALS! After months of preparation and hundreds of training miles logged, members of Team ALS rallied after learning the news and put plan B into action. Several members opted to "Run Anyway" with thousands of fellow Marathoners in Central Park, while others completed their Marathon miles in their home towns or made plans to run "4 A Cure" in alternate Marathons throughout the country.
While the finish lines may have been scattered, and some are yet to be crossed, the Greater New York Chapter congratulates our 2012 Marathon Team ALS on their amazing efforts and tremendous accomplishment in raising over $50,000 to support ALS research and patient services.
To learn more about our Team or make a donation, please visit our TEAM ALS ING Marathon website.
National ALS Registry
It's been 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 firstname.lastname@example.org. If you live in New Jersey contact Debbie Schlossberg at (732) 710-8832 or email@example.com.
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
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.
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.
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.
Stay tuned for details on the next YPG event.
For information about the ALS Association's Young Professionals Group and upcoming meetings, please click here.
Find out instantly about the latest in ALS research,
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