ALS Association of Greater New York

New Year’s Resolutions to Help Fight ALS!

noreply@blogger.com (ALSofGNY Blog) — Thu, 26 Dec 2013 18:13:00 +0000

The New Year is a time of reflection, renewal, and of course, resolutions. As we celebrate the dawn of 2014, we look forward to the day when there is a cure for ALS. Until then, we can all do our part in the fight. Here are 12 resolutions you can do (one per month) to help fight ALS all year round:

1. Donate - Make a gift to The ALS Association Greater New York Chapter and remember to check if your company offers matching gifts.

2. Volunteer - Help people living with ALS and their caregivers with simple tasks to improve their lives. You can also volunteer at one of the several events the Chapter holds each year, including the Walk to Defeat ALS. Contact Chris Dunn at dunn@als-ny.org.

3. Advocate - Join us in Washington, DC in May and advocate for ALS related issues to your Senators and Member of Congress. If you can’t make it to Washington, sign a letter to your representatives showing your support for more ALS government support. For more information, Click Here. or contact Daryl Cochrane at (212) 720-3051 or dcochrane@als-ny.org.

4. Participate - Take part in the ALS Association’s signature fundraising event the Walk to Defeat ALS www.ALSWalks.org. There are seven Walks throughout the region. Find one near you. Take strides to defeat ALS. Contact Sarah Pattison at spattison@als-ny.org or (212) 720-3042 for more info.

5. Join - Be a part of Team ALS Running 4 A Cure and connect with dozens of runners throughout the region who participate in a variety of runs 5K, 10K, half marathon, and in the New York City Marathon. If you're just getting started or are an experienced runner, you can be part of Team ALS and raise funds and awareness. Contact Kristen Cocoman at cocoman@als-ny.org or (212) 720-3048 for more information.

6. Write a Letter - Write a Letter to the Editor of your local newspaper and raise awareness about ALS in your community. Or you could even blog your story. Share it with us and we could post it on the Chapter blog as well. Tell your story from the heart and get it published. Contact Manager of Communications, Daryl Cochrane at (212) 720-3051 or dcochrane@als-ny.org to help find your local newspaper. Speak out.

7. Get Connected - If you’re on social media, join one of the numerous platforms the Chapter provides and stay informed between Monthly Updates. Be a part of our 7,000+ member community on Facebook, Twitter, and LinkedIn throughout the region. 8. Organize an Event Plan an event in your community to raise funds and awareness for the ALS Association. Whether it is a bake sale at a school, a rummage sale at your church, a poker night at your home, or a happy hour at a bar or restaurant, you can organize an event in your community that best suits you. We have a team of people here to support you. Contact Ally Davis at adavis@als-ny.org or (212) 720-3049 for more information.

9. Make Financial Plans - Include the ALS Association Greater New York Chapter in your will, donate securities to the Chapter, or take advantage of our planned giving program. There are a number of other creative and financially sound ways to make a gift. Contact Loren Domilici for more information at ldomilici@als-ny.org or (212) 720-3060.

10. Register - If you’re living with ALS, we encourage you to enroll with the National ALS Registry and be counted. Complete the surveys so the Centers for Disease Control & Prevention can better understand the nature of ALS and bring us one step closer to a cure. If you're already registered, there are two NEW surveys just released by the CDC that are now available for you to complete. The Registry also includes a bio-repository and clinical trials notification features that allow patients to directly participate in the research process. For more information and assistance on how to register, contact Chris Dunn at dunn@als-ny.org.

11. Take in a Game - Throughout the summer, the ALS Association teams up with Minor League Baseball to raise awareness for ALS throughout the country. Look for an ALS Awareness Day with the MiLB team nearest you and head out to the ballgame. ALSA is an official Charity Partner of Minor League Baseball. Contact Kristen Cocoman at cocoman@als-ny.org or (212) 720-3048 for more information.

12. Wear it and Share it - You can raise awareness for ALS through fashion or on your car. Purchase a stylish ALS awareness bracelet or affix a bumper magnet for your car and raise awareness for ALS with those you pass by every day. Visit the online Chapter Store.

And there's one more thing that you can do that is the most basic way to raise awareness about ALS…

Talk about it - Whether you’re living with ALS or know someone who is or has, tell your story to your friends and colleagues and make your ALS story heard. The more people know about ALS, the more understanding we can generate and the more hope we can provide. It can be very painful to talk about, but your voice is needed to help spread the word.

If you do all the resolutions, or even just one, you will make a difference. If you need any help along the way, the staff of the ALS Association Greater New York Chapter is here to assist you and get you started. Call us at (212) 619-1400 or email als@als-ny.org and we’d be happy to discuss ways for you to get involved in the fight against ALS. From the Chapter Board & Staff, Happy New Year!

To find out more about The ALS Association Greater New York Chapter, click here.

Highlights from 24th International ALS/MND Symposium

noreply@blogger.com (ALSofGNY Blog) — Thu, 26 Dec 2013 14:57:00 +0000

The 24th International Symposium on ALS/Motor Neuron Disease was held in Milan, Italy, December 6-8, 2013, drawing hundreds of researchers and clinicians from around the world. Here are some highlights from the meeting:

Immune System as a Therapy Target
The immune system continues to grow as a target of interest in therapy design.

Serge Rivest noted that contrary to some long-held beliefs, there is quite a lot of immune system activity in the central nervous system. But it is has some unique characteristics that may both contribute to the problems in ALS and point the way to development of therapy. Dr. Rivest has worked in Alzheimer’s disease, which shares some important similarities with ALS in terms of neurodegeneration and immune involvement. He has found that stimulating a specific type of immune cell, called an M1 monocyte, helped slow neuronal loss in a genetic mouse model of AD.
Kuti Baruchhas shown in a mouse model of ALS that promoting movement of immune cells across a membrane in the brain called the choroid plexus increases survival.

C9ORF72: Gene Modification, Repeat Length Variability
The C9ORF72 gene expansion continues to provide important insights into ALS disease development.

In work supported by The ALS Association, Veronique Belzil showed that the mutant gene is chemically modified to reduce the amount of protein made from it. That lack of protein may contribute to disease. The modification, called methylation, is a dynamic process that can be reversed and promoting that reversal may be therapeutic.
Marka van Blitterswijk carefully measured the repeat length in various tissues in patients with frontotemporal dementia/ALS and found that the mutation length varied enormously even within a single individual’s tissues. Repeat length in the skin or blood did not correlate with disease subtype, disease duration, or prognosis, meaning that at the moment, it is not possible to make clinically meaningful predictions for individual patients based on the repeat length in tissues that are accessible for sampling.

Discovering New Gene

An analysis of genetic variation among more than 13,000 people with ALS has revealed a potentially important new “locus” on chromosome 17 that is linked to the disease. The gene or genes in this region are not yet known, but this finding will likely lead scientists to search in earnest for it. The same team found another potentially important locus on chromosome 18
Aaron Gitler presented results from the first genetic analysis of ALS “trios” (a patient and both parents) to search for disease-causing mutations that were not inherited from either parent (“de novo” mutations). He reported finding new mutations in genes that control chromosome structure, a potentially important new function for understanding ALS.
Olubunmi Abel provided an update on the ALS Online Genetic Database (http://alsod.iop.kcl.ac.uk), noting the ability of the database to provide comparisons between any pair of ALS-related genes, to predict the disease-causing ability of new mutations and other useful features.

The Importance of Endogenous Neuroprotection
Motor neurons have some capacity to protect themselves from potentially harmful threats. Such endogenous neuroprotective mechanisms are often activity-dependent; that is, the more active the neuron, the greater its capacity to protect itself. Pico Caroni gave an overview of work showing that the most vulnerable motor neurons in ALS are the so-called “fast fatigable” (FF) motor neurons. In the SOD1 mouse model, FF neurons begin to show signs of pathology even before birth. Enhancing their excitability increased their ability to protect themselves against SOD1-mediated toxicity. This neuroprotective ability required a signaling molecule called mTOR, suggesting that this protective pathway may be an important one for further therapeutic exploration.

Robotic Analysis for High-throughput Screening
The search for new treatments often relies on a “high-throughput” screen, a test of hundreds to thousands of chemicals to find the small handful that have the desired effect. At the Milan meeting, Steven Finkbeiner provided an overview of a robotic screening system that analyzes treatment effects on motor neurons. In this system, induced pluripotent stem cells (iPS cells) derived from ALS patients are differentiated into motor neurons, which are then grown in culture. The robotic system allows tracking of individual motor neurons (as opposed to averaging results for large groups of them) over time, to observe disease progression and the effects of treatment. Recently, Dr. Finkbeiner and colleagues used the system to assess the ability of an experimental compound to rescue ALS motor neurons from the toxic effects of TDP-43, a protein that misfolds and accumulates in almost all forms of ALS (http://www.ncbi.nlm.nih.gov/pubmed/24336168).

Biomarkers and Treatments
Recently, several groups have made progress on finding biomarkers that can track disease progression.

In work supported by the North Carolina Jim “Catfish” Hunter Chapter of The ALS Association, Benjamin Brooks showed that an easily measured protein in blood serum, called creatinine, declined over the course of the disease. The decline correlated with decline in the ALS Functional Rating Scale, the current gold standard of disease progression and predicted loss of ambulation, a clinically significant milestone in the disease. Further work may allow serum creatinine to be used as a biomarker in clinical trials to determine response to therapy.
Tirasemtiv has been developed for symptomatic treatment of ALS. It promotes calcium release from muscle, increasing the force produced by muscle contraction. It has been shown to be safe and effective in single and multiple doses in ALS patients. Jeremy Shefner presented an interim report on an ongoing trial of more than 700 ALS patients randomized either to placebo or 250 mg tirasemtiv given twice per day. He noted that dizziness is the most common adverse event and usually resolves within a week of the start of treatment. Complete results are expected in mid-2014.
The ALS Association sponsored a study of the costs of care at 18 multidisciplinary clinics in the United States that adhere to the treatment guidelines for ALS created by the American Academy of Neurology. Adherence to practice parameters was very high, except that only half had advance directives in place for patients. Patient satisfaction was high. Cost of salary and benefits paid per clinic day was about $500 per patient, with a range from $258 to $806. The study was not able to capture all costs of care, the authors noted.

For more information about The ALS Association Greater New York Chapter click here.

Team ALS is Running 4 A Cure

noreply@blogger.com (ALSofGNY Blog) — Mon, 23 Dec 2013 12:55:00 +0000

As we wrap up our final month of Team ALS races, we'd like to share with everyone the wonderful achievements of Team ALS.

2013 has been a fantastic year for Team ALS. With Team enrollment on the rise, we broke a number of Team records (and a lot of personal records too!):

29 Team Members

2 Half Marathons

2 Full Marathons

1 24-Hour Race

Over $90,000 and a tremendous amount of awareness was raised!

For more information on upcoming Team ALS races including the 2014 NYC Half Marathon, please visit the TEAM ALS website at: http://web.alsa.org/goto/teamals or contact Kristen Cocoman, Director of Marketing & Special Events at cocoman@als-ny.org or (212) 720-3048. All Team ALS members will receive an official TEAM ALS t-shirt.

Thank you Team ALS for a fantastic season!

For more information about The ALS Association, please click here.

Thanksgiving Care

noreply@blogger.com (ALSofGNY Blog) — Thu, 19 Dec 2013 12:51:00 +0000

As in every year, the end of November is highlighted by Thanksgiving and the start of the Holiday Season. November is also National Caregivers Month.

A tradition at the Greater New York Chapter is to provide Thanksgiving meals to people living with ALS and their family and caregivers. This year nine families received a traditional Thanksgiving meal with a turkey, delicious sides, and dessert. Additionally, family and caregivers receive a basket with plates, napkins, cups, and some delectable treats to complement the holiday and to ease some of the added stress that comes with the season.

Special thanks to the dedicated volunteers and members of the Chapter's Young Professionals Group (YPG) for delivering these baskets and bringing families impacted by ALS a bit of cheer during the holidays.

To volunteer with the ALS research or for more information about The ALS Association, please click here.

Walk to Defeat ALS Has Another Record-Breaking Season!

noreply@blogger.com (ALSofGNY Blog) — Wed, 18 Dec 2013 15:00:00 +0000

Congratulations to the thousands of Walkers who participated in the 2013 Walks to Defeat ALS! With seven Walks, 671 teams, and over 12,000 Walkers joining together in the fight against Lou Gehrig’s Disease, it was another record-breaking and inspiring year.

We are delighted to report that through your work and dedication, the 2013 Walks raised over $2,047,000 to date! But it's not too late for you to defeat ALS and to be a part of the Walk. Click here to donate to a Walk team near you and help them reach their goal.

Also, there were many photos taken at each Walk. To view or purchase photos of the 2013 Walks, please click here. They make a great holiday
gift!

Stay tuned for dates for the 2014 Walks to Defeat ALS season coming soon!

Click here to visit The ALS Association Greater New York Chapter's website.

19th Annual Lou Gehrig Sports Awards Benefit Raises Over $1.1 Million For ALS Research & Patient Care

noreply@blogger.com (ALSofGNY Blog) — Tue, 17 Dec 2013 14:30:00 +0000

On November 7th the Chapter honored four outstanding athletes at the 19th Annual Lou Gehrig Sports Awards Benefit.

Honorees who received the prestigious Lou Gehrig Sports Award included recently retired New York Yankees closing pitcher Mariano Rivera, former New York Mets pitcher and sports broadcaster Ron Darling and former New York Giants quarterback and sports broadcaster Phil Simms. Former fullback for the New England Patriots and Philadelphia Eagles Kevin Turner, who is battling ALS himself, was also honored. The character, courage, and determination shown by each of the awardees truly embody the legacy of Lou Gehrig.

ESPN’s Jeremy Schaap served as the evening's emcee.

Additionally, the Jacob K. Javits Lifetime Achievement Award was presented to philanthropist and entrepreneur Richard P. Essey, Chairman of The TemPositions Group of Companies, for his decades-long support for The ALS Association.

The evening was a great success, raising over $1.1 Million for ALS research and patient care services. To view the photo gallery from the event, please click here.

Ask Ben: Making an iPad Easier to Use

noreply@blogger.com (ALSofGNY Blog) — Mon, 16 Dec 2013 14:00:00 +0000

I have ALS and recently it's been easier for me to sit in a comfortable chair with my iPad, rather than sit at my computer. However lately, I'm finding it harder to even use the iPad. I do use the special stylus a bit, but is there anything I should consider to make the iPad easier to use?

-- Todd, Poughkeepsie, NY

I'm happy to say that as of September, yes there is. For someone who struggles with moving their finger around the screen, "switch scanning" has recently become available on the iPad (2 and up) and iPhone (4 and up) with the iOS7 operating system. A switch is an external button you 'tap' (acquired separately). Switch scanning allows you to activate various locations around the screen, from navigating apps to composing emails, with a single tapping motion.

For the more technology-oriented who are reading this, and if you have a family member who might need some help with implementing new technology, my suggestion is to learn it first yourself. There are many adjustments to get it just right.

With the right adjustments in the settings menu (primarily in 'Accessibility' and the 'Switch Scanning'), you can continue to use the iPhone or iPad, with diminished hand control. Instead of moving your finger to, and touching, any point on the screen, the device does that for you. A highlighted block moves around the 'touchable areas' of the screen. When the area you want to select is highlighted, you press a switch. This tells the device which location to activate with one motion. That motion can be tapping the screen (in one place) with a finger, or tapping a switch connected through a wireless Bluetooth connection.

A point scan method is also available. Point scanning moves a horizontal line and vertical line across the screen. With a switch, or tap on the screen, you can 'select' where the lines intersect, and that specific point is activated. It could be a letter while you are typing, or it could be a news items and you want to link to the story. Everything is available. It is faster to press the buttons directly. But if that is difficult, switch scanning is a good option.

Apple has a description of switch and point scanning on their website (search their
website for iOS using switch scanning) and there are also numerous YouTube videos to help get you get started. As with anything new in technology, there is a learning curve. Give yourself some time to learn the options and settings. NOTE: If you get stuck, 3 clicks on the home button turns off the switch scanning.

While the new functionality of iOS7 will allow you to continue to use your iPad, it is a learning process that requires practice and focus in order to improve. The result will be that you have the full access to the iPad, including apps to communication more effectively with loved ones and caregivers.

Have a wonderful holiday season, and a Happy New Year.

- Ben

Ben Lieman, ATP, MSW is the Assistive Technology Specialist with the Greater New York Chapter, advising patients and caregivers about medical equipment, home accessibility, and augmentative communications devices. 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.

To make a donation to ALS assistive technology or for more information about The ALS Association, please click here.

In Search of the Perfect Gift?

noreply@blogger.com (ALSofGNY Blog) — Fri, 13 Dec 2013 12:42:00 +0000

Sometimes the simplest gifts leave the biggest impression. This year consider making a big impression in support of our PALS (people with ALS).

Your gift can help support Patient and Family Services, Research and Advocacy.

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 2013. To donate or more info, contact Loren Domilici, Development Manager at (212) 720-3060, email her at ldomilici@als-ny.org or click here.

Research Update: Discovery of Immune Cell's Molecular Signature Likely to Speed ALS Therapy Development

noreply@blogger.com (ALSofGNY Blog) — Thu, 12 Dec 2013 13:19:00 +0000

In work supported by The ALS Association, researchers have for the first time identified a unique molecular “signature” for a type of immune cell in the brain and spinal cord believed to contribute to ALS. The study was published in the journal Nature Neuroscience.

ALS (amyotrophic lateral sclerosis), often referred to as Lou Gehrig’s Disease, is a progressive neurodegenerative disease that affects neurons (nerve cells) in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. There is no cure and no life-prolonging treatments for the disease.

The research team investigated ways to distinguish cells called microglia, which reside in the brain and spinal cord, from other immune cells that migrate in during the ALS disease process. Under certain conditions, microglia are thought to accelerate ALS by contributing to “neuroinflammation,” an inflammatory process that contributes to the loss of motor neurons. Motor neurons are the major neuron type affected in ALS. They found that microglia could be identified by their expression of a unique set of genes and that this expression depended on a growth factor called TGF-beta.

“This should provide a basis for both understanding microglia biology and for modulating microglia in the treatment of central nervous system diseases,” said Oleg Butovsky, PhD, who led the study, along with Howard Weiner, MD. Dr. Butovsky is Instructor in Neurology at Harvard Medical School. Dr. Weiner is Professor of Neurology at Harvard.

“Microglia have emerged as potentially critical contributors to ALS,” said Lucie Bruijn, PhD, Chief Scientist for The Association, “and may be an important—and accessible—target for therapy to slow the progress of the disease. The more we can learn about their function, and how to precisely identify them, the faster we can translate that knowledge into new treatments.”

Dr. Butovsky is funded through a TREAT ALS™ Drug Discovery contract. The milestone-driven program enables the investigator to further develop a treatment approach and bring an important discovery closer to the clinic.

To make a donation to ALS research or for more information about The ALS Association, please click here.

Happy Holidays From The ALS Association Greater New York Chapter

noreply@blogger.com (ALSofGNY Blog) — Thu, 05 Dec 2013 18:31:00 +0000

The holiday season is upon us again and we take this time to give thanks and to reflect back on the Chapter's accomplishments over the past year.

The Greater New York Chapter is among the most successful of The ALS Association’s network of 38 Chapters. This past year, our Chapter reached a significant milestone by raising more than $4 million to fund our key programs of Research, Patient Services, and Advocacy.

Patient service continues to be at the core of our Chapter’s mission. We now serve more than 750 people living with ALS and their families in our four areas of operations New York City, Long Island, Westchester County/Hudson Valley, and Northern & Central New Jersey.

Your support helped us to provide state-of-the-art multidisciplinary care at our three ALS Association Certified Centers of Excellence Beth Israel Medical Center, Rutgers Robert Wood Johnson Medical School, and Stony Brook University Hospital, as well as our ALS Association Program at the Hospital for Special Surgery, now in its second year of operation.

Your generosity allows us to act globally and locally. Our Chapter continues to fund some of the most innovative and rigorous ALS research in the world and to engage successfully in public awareness and advocacy efforts.

In May, our Chapter’s delegation of 30 advocates travelled to Washington, DC for National ALS Advocacy Day and reached out to our local Members of Congress to continue the urgent fight to develop effective treatments for ALS.

During the Spring and Fall, our Chapter sponsored seven Walks to Defeat ALS. More than 12,000 people participated and raised more than $2 million to advance our mission. Additionally, just last month at the 19th Annual Lou Gehrig Sports Awards Benefit, the Chapter raised $1.1 million for patient care services and research.

We are helping more people and we are funding more research. We are making progress -- thanks to you!

Thanksgiving is now passed, but it's never too late to express our gratitude to all of our volunteers, donors, advocates, caregivers, and most of all - our PALS. You are the heart & soul of this organization and it is a privilege to fight ALS alongside of you.

On behalf of the entire Board and Staff of The ALS Association Greater New York Chapter, I wish you the Happiest of Holidays & a peaceful New Year.

Sincerely,

Dorine Gordon

To make a donation to ALS research or for more information about The ALS Association, please click here.

Clinical Pilot Study Will Test Anti-inflammatory Drug for ALS

noreply@blogger.com (ALSofGNY Blog) — Thu, 14 Nov 2013 13:12:00 +0000

The ALS Association and the Neurological Clinical Research Institute (NCRI) of Massachusetts General Hospital are pleased to announce a partnership for funding a clinical pilot study of tocilizumab, an anti-inflammatory drug. The partnership is part of an initiative to encourage the use of biomarkers in Phase II clinical trials to strengthen trial outcomes.

The study will test whether tocilizumab can slow disease progression in people with ALS and will be led by Shafiq Lahda, M.D., of the Barrow Neurological Institute in Phoenix, Ariz., and Richard Barohn, M.D., of Kansas University Medical Center in Kansas City, Kan.

“There is an urgent need for better ALS treatments and therapeutic agents,” said Lucie Bruijn, Ph.D., Chief Scientist for The Association. “This pilot study will determine whether this drug, already approved for rheumatoid arthritis, can offer benefit in ALS.”

The MGH NCRI will provide study project and data management. The State University of New York, Upstate, will provide study monitoring and outcome measure training. Sites will be selected from the Northeast ALS Consortium (NEALS), a nationwide group of ALS clinical researchers with a long history of partnership with The ALS Association.

“The NCRI and The ALS Association are extremely well-positioned to work with both academic and industry partners to rapidly bring the best ALS science into clinical testing,” said Merit Cudkowicz, M.D., Chief of Neurology at Massachusetts General and Director of NCRI. NCRI serves as the coordinating center for NEALS.

Clinical studies funded through the program must include measurement of pharmacodynamic markers, also known as biomarkers, to determine whether the treatment has altered its intended molecular target and to collect tissue samples for detailed analysis of response to therapy. In the tocilizumab study, researchers will measure inflammatory gene changes in blood cells and cerebrospinal fluid. Inflammation is thought to be a central part of the ALS disease process.

The study is funded through a partnership agreement between The ALS Association and NRCI to develop novel, high-potential treatments for people with the disease.

To make a donation to ALS research or for more information about The ALS Association, please click here.

Three Studies Highlight Findings Involving the C9orf72 Gene Mutation

noreply@blogger.com (ALSofGNY Blog) — Wed, 13 Nov 2013 12:29:00 +0000

Three studies supported by The ALS Association expand the understanding of the effects of the C9orf72 gene mutation, the most common genetic cause of ALS.

“These studies provide important new insights into this gene,” said Lucie Bruijn, Ph.D., Chief Scientist for The Association. “By learning more about the all consequences of the mutation, we can look for multiple therapies to address them.”

Researchers showed in the first study that the mutant gene is modified to reduce the amount of protein that is made from it. This modification, called histone methylation, affected the mutant copy of the gene but not the normal copy also carried by virtually all people who carry the mutation. It is possible that this modification accounts for the lower levels of the C9orf72 protein seen in people with ALS. The function of the protein is unknown, but it is possible that a decrease in the protein may be harmful to cells. The researchers saw this methylation change not only in neurons, but also in blood cells. This means that methylation might be valuable as a “biomarker” to detect the presence of the gene mutation. Biomarkers serve as an indicator of a particular condition in the body. This study was conducted by Veronique Belzil, Ph.D., and Peter Bauer, M.D., Ph.D., under the guidance of Leonard Petrucelli, Ph.D., all of the Mayo Clinic in Jacksonville, Fla. Dr. Petrucelli’s research is funded by The Association. This study was published in the journal Acta Neuropathologica.

In the second study, Tania Gendron, Ph.D., and graduate student Kevin Bieniek, together with Dr. Petrucelli and Dennis Dickson, M.D., also of the Mayo Clinic Jacksonville, showed that the C9orf72 mutation is “read” by the protein-making machinery of the cell in an unusual way. The DNA that forms all genes has two strands, which pair together. Normally, only one strand is used to form the “messenger” molecule RNA, which ultimately provides the information for making the protein. When the C9orf72 gene is mutated, that messenger RNA becomes very long and tangled, presumably leading to many of the problems seen in ALS neurons. In thisActa Neuropathologica.
study, the authors found that not just one strand, but both strands of the DNA, were used to form messenger RNA, and that RNA from the usually silent strand also became tangled. In addition, this RNA was “read” by the protein-making machinery as well, forming unusual short proteins called “RAN peptides.” The contribution of RAN peptides to ALS is unknown and is the subject of intense investigation. This study was also published in

“These results give us new leads in our pursuit of understanding the consequences of the C9orf72 mutation,” Dr. Bruijn said. “Our next step is to determine just how significant each of these changes is and whether they can be mitigated by development of new therapeutics.”

Researchers involved in the third study showed that the tangles of RNA caused by the C9orf72 mutation could be reduced using “antisense” molecules that bind to and help degrade RNA. Working in cultured neurons derived from people with this mutation, antisense treatment also corrected several mutation-induced abnormalities in the neurons, indicating the potential for antisense treatment for people with C9orf72-caused ALS. The study was conducted by Dhruv Sareen, Ph.D., under the leadership of Robert Baloh, M.D., both of Cedars-Sinai Medical Center in Los Angeles, Calif., with contributions from Dr. Petrucelli.

“Antisense therapy is a highly promising approach to treatment of ALS due to known gene mutations,” Dr. Bruijn noted. “The Association is at the forefront of support for developing this type of therapy, and these results give us still more hope that it may be a valuable treatment.”

To make a donation to ALS research or for more information about The ALS Association, please click here.

Ask Ben: Getting a Wheelchair Accessible Van

noreply@blogger.com (ALSofGNY Blog) — Mon, 11 Nov 2013 13:00:00 +0000

My husband has ALS and is no longer able to transfer into a car comfortably. Now our family can no longer take short trips together. I was wondering about the possibility of getting a wheelchair accessible van. Can you tell me how to best go about that?

- Karen, Mahwah, NJ

The purchase of a new or even used adapted vehicle can be costly, so there are a number of things to carefully evaluate when considering obtaining a wheelchair accessible vehicle.

One option is the outright purchase of an adapted vehicle. You can find adapted vehicles listed online or in the newspaper, or at some dealerships. But you need to be knowledgeable about vehicles. An adapted vehicle has the standard issues of car ownership…brakes, mileage, engine, tires, and also the added issue of a working wheelchair ramp. The ramp itself can be $3,000-$6,000 to repair. The cost is higher, if the ramp needs to be replaced. You can find used adapted vehicles starting at $5,000. (Buyer beware!) At a dealership, they could potentially offer a few months guarantee, which could afford you some recourse if you run into problems right away. New adapted vehicles can run up to $50-$60,000. This option is unfortunately cost prohibitive for many families, however, if you are able, you will then have constant access to a vehicle to come and go as needed.

Another option you might want to consider is a rental. Renting an accessible vehicle can be done just to get away for a day, or combine a trip to a restaurant or visit with a friend following a clinic visit. I encourage families to take advantage of this option at least once, if only to determine if it is something you would be comfortable doing again in the future.

In New York and New Jersey, there are a few companies that rent accessible vans, and the cost is not much higher than renting a car. Because there are only a few of these companies, you may have to drive to pick up the vehicle, and then drive it home to transfer the person with ALS into it. It may differ from having your own car, and there are some per trip costs, but being able to ‘get out’ is important. Each family must decide if it is worth it.

Since accessible vehicles are not as readily available as standard cars, advance planning is recommended. Even if you don’t need a vehicle at this time, contact the companies in your area, to know where they are located, and what the rental process is in advance. It will help be prepared if a need or opportunity comes up unexpectedly. For a list of companies that rent accessible vehicles in the New York/New Jersey area, please contact me.

Lastly, while our loan program does have a few wheelchair accessible vehicles, there is great demand and short supply, and therefore the waiting list to receive such a van can be quite lengthy, and could be as long as a year.

Regardless of which option is right for you and your family, having access to an adapted vehicle provides an extended range of involvement and independence.

- Ben

Ben Lieman, ATP, MSW is the Assistive Technology Specialist with the Greater New York Chapter, advising patients and caregivers about medical equipment, home accessibility, and augmentative communications devices. 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.

Give Thanks!

noreply@blogger.com (ALSofGNY Blog) — Fri, 08 Nov 2013 14:00:00 +0000

November is Caregivers Month - a time to be thankful for the caregivers in our lives and to remember those that continue to struggle with everyday finances while remaining the strong support in a family affected by ALS. We all know how important caregivers are in the lives of PALS; they are the dedicated force making the life of PALS a bit more comfortable.

Please take this time to show your thanks for the caregivers in your life by making a donation to help another. Your gift, will help the Chapter provide supportive services including counseling home visits to our Chapter's caregivers and will speak volumes to show our caregivers they are not in this alone. Together, we can take care of them.

To donate or more info, contact Loren Domilici, Development Manager at (212) 720-3060 or ldomilici@als-ny.org.

Saluting Our Veterans

noreply@blogger.com (ALSofGNY Blog) — Wed, 06 Nov 2013 13:00:00 +0000

Every November 11th our nation commemorates Veterans Day, honoring those have served in our country's armed forces. This is especially meaningful to the ALS community, as those who've worn a military uniform are twice more likely to develop ALS than civilians.While the exact cause remains unknown, the U.S. Department of Veterans Affairs offers an array of benefits those living with ALS who've fought for our country.

To honor those veterans with ALS, living and departed, The ALS Association created the Wall of Honor as a tribute. If you are a veteran, please join other area veterans and tell your story.

If you are a loved one of a veteran, please share their story on the Wall of Honor. Here are just some of the outstanding veterans of New York and New Jersey on the Wall of Honor:

Carol Costanza-Edwards -- Teaneck, NJ
Women's Army Corp (WAC), 1959-1961

Served at Fort Carson, just outside Colorado Springs, Colorado. She died of ALS just this past July, survived by four children and several grandchildren.

Leonard Gagliardi -- Brooklyn,
NY Navy, 1942-1945

Served as a Naval Medic during World War II in North Africa. After returning stateside he got married, moved to Freeport, NY and raised six children. He worked at the Daily News. His brother also died of ALS.

Luis Journett -- Union City, NJ
Army, 1963-1965

Stationed in Vietnam, he was a decorated sharpshooter in the Airbourne Division. After his tour of duty he returned to New Jersey and was married for 43 years, raising five children and having 16 grandchildren. He died in the Fall of 2011 after a brief battle with ALS.

Fred Ruprecht -- Wantagh, NY
Navy, 1951-1955

Served as an Engineman on the USS Purdy during the Korean War. Upon returning to civilian life he became a New York City Fire Fighter and raised four children with his childhood sweetheart. He was diagnosed with ALS just before Christmas 2006 at the age of 74, but continued to care for his wife who was suffering with Alzheimers. He died less than a year following diagnosis.

Andre Williams -- Far Rockaway, NY
Army, 1980-1986

Enlisted and was subsequently deployed to a field artillery unit in Germany testing tanks and cannons. Following his service, he worked for over 20 years as a plumber and plumbing instructor. Andre is an ALS Advocate, particularly on issues related to veterans.

To learn more about Veterans' benefits for those living with ALS or to tell your ALS story as a veteran (or posthumously by a loved one) on the Wall of Honor, please visit www.alsa.org/veterans.

The Greater New York Chapter salutes our troops and thanks them for their service to our country.

Antisense for the Most Common ALS Gene Appears Safe in Initial Study

noreply@blogger.com (ALSofGNY Blog) — Tue, 05 Nov 2013 14:42:00 +0000

In work supported by The ALS Association and published in the Proceedings of the American Academy of Science, researchers showed that reducing the production of an ALS-causing gene mutation in mice is safe over the long term. This provides support for moving this therapy forward in people with ALS, whose disease is caused by mutations in this gene, called C9orf72.

“These results are very encouraging for the field, as we develop new approaches to ALS therapy based on specific gene defects,” said Lucie Bruijn, Ph.D., Chief Scientist for The Association. “Targeting this mutation has the potential to be a significant form of therapy for many ALS patients.”

The C9orf72 gene is the most common genetic cause of ALS, accounting for more than a quarter of all familial cases and more than 5 percent of sporadic cases. The mutation is a large expansion of a six-nucleotide repeat unit, GGGGCC. The normal gene contains no more than 30 of these units, while the mutant gene may contain many dozens to hundreds of them. The mutant gene produces a long and sticky strand of RNA, which clumps together and interferes with cell function through unknown means.

In the study, researchers showed that targeting the RNA with so-called antisense oligonucleotides (ASOs) over several months effectively reduced the amount of mutant RNA and produced no worrisome effects in the mice, either at the tissue level or on behavior. “Our findings support that ASO therapy to reduce hexanucleotide repeat-containing RNAs is a rational, promising approach” for treatment of ALS, the authors concluded.

The study was funded by The Association’s Greater Philadelphia Chapter and conducted by Clotilde Lagier-Tourenne, Ph.D., and led by John Ravits, M.D., Ph.D., and Don Cleveland, Ph.D., all of the University of California at San Diego. Two co-authors, Shuying Sun, Ph.D., and Qiang Zhu, Ph.D., also of UCSD, are recipients of The Milton Safenowitz Post-Doctoral Fellowship for ALS Research Award. This 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. Dr. Lagier-Tourenne is a previous recipient of the same award.

To make a donation to ALS research or for more information about The ALS Association, please click here.

YPG Masquerade Event Raises $5K For ALS

noreply@blogger.com (ALSofGNY Blog) — Mon, 04 Nov 2013 13:00:00 +0000

The ALS Association’s Young Professional Group hosted their annual Fall Fundraiser on October 25th at Maxwell’s Bar & Restaurant in TriBeCa, NYC.

This masquerade-themed event was attended by nearly 90 people including YPG members and their friends and family. Everyone came dressed in masks and costumes for a great night that raised almost $5,000 in support of the Chapter’s research and patient services programs.

Thank you to those who came out and made this event a big success!

November is National Caregiver's Month

noreply@blogger.com (ALSofGNY Blog) — Fri, 01 Nov 2013 15:24:00 +0000

by Adele Marano, LCSW Director of Patient Services, Greater New York Chapter

When someone you love is diagnosed with ALS, the events that follow can result in a wide range of emotions -- from anxiety to feeling overwhelmed. For caregivers, these emotions, combined with the new demands placed on them can lead to a sense of frustration, loneliness, and guilt. In fact, more than 50 million people provide care for an ill, disabled or elderly family member or friend during any given year. A number of these caregivers take on their new responsibility as a full-time job.

Being a caregiver is hard work, involving emotional, financial, social, and nursing skills, often on a 24/7 basis. Many find themselves doing things they could not have previously imagined to ensure their loved one is properly cared for and their needs, both basic and complex, are met. However, when caring for another's needs, it's important to remember one's own needs, for a caregiver's work cannot get done if the caregiver is burned out.

Perseverance is a constant for ALS caregivers. But no matter how difficult the journey, please know that you are never alone. There are approximately 30,000 people living with ALS in the United States today and many times as many caregivers, some part-time, some full-time, some paid, some uncompensated, but regardless, all caregivers must be mindful to care for themselves, as well as the person with ALS in their life.

Here are ten helpful tips that may help caregivers cope:

1. Choose to take charge of your life and don’t let your loved one’s illness or disability always take center stage.

2. Remember to be good to yourself. Love, honor, and value yourself. You’re doing a very hard job and you deserve some quality time, just for you.

3. Watch out for signs of depression, and don’t delay getting professional help when you need it.

Feel free to speak to a Chapter social worker when they're visiting or calling your home. They are there as a resource, not just for the patient, but for caregivers as well. Also call the Chapter office to speak with a trained social worker.

4. When people offer to help, accept the offer and suggest specific things that they can do. This brief respite could allow you to run errands, visit with friends and family, or just relax.

5. Educate yourself about your loved one’s condition. Information is empowering.

Information about ALS can be found on the Chapter website: www.als-ny.org. Also, caregivers should engage with healthcare professionals during medical visits, so you have a better sense of the disease and the toll it's taking on your loved one.

6. There’s a difference between caring and doing. Be open to technologies and ideas that promote your loved one’s independence.

The Chapter has an Assistive Technology Specialist - Ben Lieman - on staff to help you figure out what equipment or augmentative communications device is right for you and the one you care for. Such equipment can help with a variety of daily tasks, from lifting to moving throughout the home, to communicating. Ben can be reached at blieman@als-ny.org or 212.720.3057.

7. Trust your instincts. Most of the time they’ll lead you in the right direction.

8. Grieve for your losses and then allow yourself to dream new dreams.

9. Stand up for your rights as a caregiver and a citizen.

The Chapter has a robust legion of ALS Advocates who work to seek change in government. The ALS Association also hosts National ALS Advocacy Day & Public Policy Conference each year. Become an ALS Advocate.

10. Seek support from other caregivers. There is great strength in knowing you are not alone.

The Chapter offers a number of support groups throughout the region for PALS and caregivers, both in person and on the phone. Many people share your same concerns. Meet others coping with ALS. There is no need to feel alone.

To learn more about these or any of the services the Chapter offers for caregivers, please call (212) 619-1400.

Different ALS Genes Cause Different Disease Processes

noreply@blogger.com (ALSofGNY Blog) — Tue, 22 Oct 2013 14:46:00 +0000

October 21, 2013

In work supported by The ALS Association and published in the journal Experimental Neurology, researchers have shown that critical aspects of the ALS disease process differ among different genetic forms of ALS.

In the most common model of the disease, caused by mutations in the superoxide dismutase (SOD1) gene, central nervous system cells called astrocytes contribute to the death of motor neurons, the loss of which is responsible for the symptoms of ALS.

Researchers involved in the study tested whether astrocytes also contributed to motor neuron death in another model of the disease, based on mutations in the TDP-43 gene. They found that neither an excess of mutant TDP-43 protein, nor the absence of any protein, in astrocytes had any effect on motor neurons, whether grown in a lab dish or in the spinal cords of rodents.

“These important findings tell us that different disease processes are likely at work in different types of ALS,” said Lucie Bruijn, Ph.D., Chief Scientist for The Association. “They reinforce that the most effective therapy may emerge from understanding the differences between forms of ALS and tailoring of treatments to these differences.”

The research was performed by Amanda Haidet-Phillips, Ph.D., under the leadership of Nicholas Maragakis, M.D., both of the Johns Hopkins School of Medicine in Baltimore, Md. Dr. Haidet-Phillips is the recipient of The Milton Safenowitz Post-Doctoral Fellowship for ALS Research Award, which 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. A portion of the Haidet-Phillips fellowship was funded through The E.F. Wallengren Fund for ALS Research.

National Respiratory Care Week: Focus on Effective Breathing

noreply@blogger.com (ALSofGNY Blog) — Mon, 21 Oct 2013 13:00:00 +0000

This month we recognize National Respiratory Care Week (October 20-26). For people living with ALS, respiratory care is a key component in ones day-to-day life. To honor this week, we'll hear from the respiratory therapist at the ALS Association Certified Center of Excellence at Beth Israel Medical Center, Betsy Thomason.

Focus on Effective Breathing

By Betsy Thomason, BA, RRT

Breathing is everybody's most important activity of daily living! In our 21st century world, most of us are breathing too fast and too shallow. We've lost the understanding that breathing provides energy and promotes relaxation. Whether you are a person with ALS (PALS) or a caregiver, effective breathing is essential for your well-being.

A respiratory evaluation is part of the care given at any ALS Association Clinic in the region. There are two parts: the subjective viewpoint of the PALS and caregiver and objective information provided by four measures of pulmonary function. Both aspects are important—one corroborates the other. Patient subjective information includes sleep habits, daytime energy levels, presence of headaches or nightmares, shortness of breath, cough-ability, water intake, and secretion management. The four objective tests are pulse oximetry (SpO2) for blood oxygen level; end tidal carbon dioxide (ETCO2), an indicator of exhale-ability; negative inspiratory force (NIF) which measures the strength of the diaphragm; and forced vital capacity (FVC) which identifies the amount of air you can get into your lungs.

The role of the respiratory therapist is to use this information to provide recommendations about home respiratory equipment and choices to facilitate patient decision making. This includes the use of a cough assist device for chest wall expansion and secretion management, mechanical ventilation non-invasively for sleep and as needed during the day, and a suction machine. Oxygen is not part of the protocol because most PALS have healthy lung tissue.

In my practice for the past 12 years as the respiratory therapist at the Beth Israel's ALS Association Clinic, I emphasize the importance of relaxation and stress management for PALS and their caregivers. Effective breathing, that is the focus on the active outbreath and passive inbreath, promotes relaxation of the autonomic nervous system and thus the entire body. Whether you purse your lips and gently blow out long and slow, or hum or grunt, you can influence your body's response to stimuli and thus save energy.

For more information about effective breathing, go to www.btbreathingtraining.com. For free excerpts from Betsy's soon-to-be published book, Just Breathe Out—Developing a User-Friendly Body, featuring the BreatheOutDynamic system, email her at betsy@btbreathingtraining.com.

AMP UP YOUR GIVING: Technology Edition

noreply@blogger.com (ALSofGNY Blog) — Wed, 16 Oct 2013 13:51:00 +0000

Through the generosity of numerous donors, our Chapter is able to provide our PALS with a wide array of equipment to help them maintain their independence, sustain mobility, and have the ability to communicate throughout the progression of the disease. Your gift, no matter the amount, can go a long way in helping us continue this important work for our region's PALS. Here is some of what your gift can provide:

$50 - Switches can give patients who have lost their ability to press on various communication devices access to an entire communication screen with one easy motion.
$150 - Communication Device Batteries allows our patients to be mobile and still maintain their communication. Communication systems can work while plugged in, but they become portable with the use of these batteries, fostering independence for patients and greater ease for caregivers.
$250 - A Voice Amplifier increases the volume of a patient with weakened or softened speech, so listeners can remain in a typical conversation space instead of staying extremely close to hear the speaker.
$350 - Wheelchair Batteries last about two years and provide one of the key components for a device that is critical to the movement of PALS. A power wheelchair cannot be used without a working battery, so this basic part of the wheelchair is one that is greatly needed for the Chapter.

Donate today to ensure we can continue to provide the highest quality of care to all our PALS and continue to provide the state-of-the-art equipment at no cost!

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

Check Out Our Service Area Map

noreply@blogger.com (ALSofGNY Blog) — Mon, 14 Oct 2013 14:03:00 +0000

We serve patients, families and caregivers throughout the Greater New York and New Jersey area. See our map and check out the counties that we service.

Region 1: New York City.
The Bronx, Brooklyn, Manhattan, Queens, and Staten Island.

Region 2: Long Island.
Nassau and Suffolk Counties.

Region 3: Westchester and Hudson Valley.
Dutchess, Orange, Putnam, Rockland, Sullivan, Ulster, and Westchester Counties.

Region 4: Northern and Central New Jersey.
Bergen, Essex, Hudson, Hunterdon, Middlesex, Monmouth, Morris, Passaic, Somerset, Sussex, Union, and Warren Counties.

To find the Patient Care Services representative in your area, call (212) 619-1400 or toll free at (800) 672-8857.

YPG Fall Fundraiser at Maxwell’s Bar and Grill in TriBeCa

noreply@blogger.com (ALSofGNY Blog) — Tue, 08 Oct 2013 14:01:00 +0000

The ALS Association’s Young Professional Group is hosting their annual fundraiser on October 25th from 8pm to 11pm at Maxwell’s Bar and Grill in TriBeCa.

This event will be a fun way to get to know current members as well as raise money and awareness for ALS, and support research and Chapter services.

Tickets include open bar, passed hors d’oeuvres and a silent auction! Tickets are on sale for $85 in advance and then $100 after and at the door.

Click here to purchase tickets.

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

The YPG has also unveiled their new logo! Check it out above and be on the lookout for it at all future YPG events and in correspondence.

Ask Ben: Trying to Stay Active

noreply@blogger.com (ALSofGNY Blog) — Mon, 07 Oct 2013 13:02:00 +0000

My husband has ALS. He used to love to ride his bike. But he can no longer do many things he used to do. Is there something he can be involved with, that allows him to be a little active, even though it is not at the same level it was before. - Joan, Nassau County, NY
Joan, you capture an experience of many people. As ALS progress, muscles are not doing what they used to, and it’s a difficult adjustment to ‘give up’ activities one is so used to doing. From hard exercise to light walking in the neighborhood, change becomes a constant. The loss of muscle function is difficult, but there are alternative ways to stay active.

One outdoor activity as an alternative to bicycling is hand-cycling. These are basically low to the ground tricycles for adults that operate by hand. When on the hand-cycle, your legs are stretched out in front, while your hands are doing the pedaling. Upper body capability is certainly needed, but there is no ‘balancing’ required like on a bicycle, as the two wheels in back and one in the front keep you firmly on the ground.

If you're in New York City, the International Achilles Club has several hand-cycles available to try it out. They can be found in Central Park on Saturday mornings from 8:00am to 11:00am at 90th Street and 5th Avenue and it’s free. There are other organizations too, devoted to providing hand-cycle opportunities for little or no cost. If you are looking to get away for a weekend this fall, Simsbury, Connecticut (2hours from the Throgs Neck Bridge) is a small bicycle friendly town with a rail trail. Several locations loan standard bikes, and CT Adaptive Cycling is dedicated to get people with disabilities on a hand-cycle.

It is important to speak with your medical professionals to determine how much exercise is right for you.

- Ben
Ben Lieman, ATP, MSW is the Assistive Technology Specialist with the Greater New York Chapter, advising patients and caregivers about medical equipment, home accessibility, and augmentative communications devices. 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.

Team ALS - in the home stretch!

noreply@blogger.com (ALSofGNY Blog) — Fri, 04 Oct 2013 13:59:00 +0000

The ING New York City Marathon is just around the corner and Team ALS is in the home stretch for their training and fundraising! If you would like to make a donation to one of this year’s Team ALS Marathon participants, click here to visit our Team page.

Show your support by joining us on Marathon Day to cheer on the Team! The Team ALS Cheering Squad will be stationed at the corner of 85th and First Avenue (S.E. corner) on the Upper East Side in front of the Starbucks. Don’t forget to wear red in support of the Team. If you would like to purchase a Team ALS t-shirt, please visit our online store.

For more information on Team ALS, email Kristen Cocoman.