Click here to view these pictures larger
Wednesday, April 29, 2009
New Facebook Page
If you are on Facebook, please click the link and befriend the NEW! ALS Association Greater New York Chapter Facebook profile.
We are migrating our Facebook page from the group page where it started to a real Facebook fan page. Why? Because fan pages act more like your regular Facebook profile pages allowing us better interactivity, sharing and a bigger presence on Facebook.
Unfortunately, Facebook does not have an easy method of transferring a business or nonprofit from a group to a fan page. Basically we have to alert all our Group members of the move and then abandon the old page for the new one. It will be work and we’ve spent a lot of time cultivating a following on our Facebook group page (almost 400 people!) but in the end I think it will be worth the effort.
Click here to become friends with us on the NEW! ALS Association Greater New York Chapter Facebook Page.
We are migrating our Facebook page from the group page where it started to a real Facebook fan page. Why? Because fan pages act more like your regular Facebook profile pages allowing us better interactivity, sharing and a bigger presence on Facebook.
Unfortunately, Facebook does not have an easy method of transferring a business or nonprofit from a group to a fan page. Basically we have to alert all our Group members of the move and then abandon the old page for the new one. It will be work and we’ve spent a lot of time cultivating a following on our Facebook group page (almost 400 people!) but in the end I think it will be worth the effort.Click here to become friends with us on the NEW! ALS Association Greater New York Chapter Facebook Page.
Tuesday, April 28, 2009
ALS Association and American Academy of Neurology Give Top Scientists Sheila Essey Award for ALS Research
The ALS Association joins the American Academy of Neurology in presenting The 2009 Sheila Essey Award for ALS Research to two clinician scientists who have significantly impacted clinical trials, epidemiology and genetics in ALS.
Dr. Merit Cudkowicz, Associate Professor of Neurology at Massachusetts Genera
l Hospital, Boston, Mass., is an international leader of clinical therapeutics in ALS. She is co-founder and co-director of the Northeast ALS Consortium (NEALS) a clinical trials network of 76 clinical sites throughout the U.S. and Canada dedicated to performing academic led clinical trials. The trials network has completed six trials: three phase III efficacy studies (topiramate, creatine and celecoxib) and three phase II studies (coenzyme Q10, sodium phenylbutyrate, arimoclomol).
Dr. Cudkowicz is currently playing a leadership role in three clinical trials through this network: ceftriaxone, lithium and arimoclomol in patients with SOD1 mutations.
In 2007 through The Association’s Translational Research Advancing Therapies of ALS (TREAT ALS) program, The Association partnered with NEALS to establish the TREAT ALS/ NEALS clinical network facilitating broader participation in ALS clinical trials. In addition, Dr. Cudkowicz has been advisor to The Association’s pilot clinical trial program, which is currently funded by The Association for the SOD1 antisense trial in familial ALS and has established a repository for patient samples.
Ongoing studies in her group, facilitated by this resource, attempt to find biomarkers or signatures for the disease to allow for earlier diagnosis and improved clinical trials. Furthermore, Dr. Cudkowicz recognizes the importance of encouraging young clinician scientistsin ALS and has mentored, among others, Dr. Aggarawal, recipient of this year’s AAN/ALS Association Clinician Scientist Development Award. Her group has focused on adaptive clinical trial design to identify promising treatments for ALS more rapidly.
“It is an honor to receive this award for my research team at the Massachusetts General Hospital Neurology Clinical Trial Unit and our collaborators in the Northeast ALS consortium. The Sheila Essey award will be used to support a novel approach to more quicklydevelop treatments for people with ALS. The award will help continue our mission to find new treatments for people with ALS,” commented Dr. Cudkowicz.
Dr. Orla Hardiman, Professor of Neurology, Trinity College Institute of Neuroscienc
e, Dublin, Ireland, developed the longest running population based register of ALS in the world. The register is now part of the European ALS group, founded by Dr. Hardiman.
Many of her studies in clinical trials, outcome measures and patient care have led to important changes in how people with ALS are cared for. Her group undertook a systematic review of the impact of ethnicity on ALS epidemiology and demonstrated that the frequency of ALS is not uniform across the world. In addition, capitalizing on the relative homogeneity of the Irish population, her group identified a series of novel mutations in angiogenin(involved in formation of blood vessels and also thought to play a role in the protection of motor neurons) linked to some cases of ALS.
Dr. Hardiman is currently part of an international consortium using genome wide technology to identify potential genes linked to sporadic cases of ALS. Dr. Hardiman, funded by The ALS Association, is undertaking a detailed population-based longitudinal survey of cognition in ALS. Her group’s data suggest that cognitive impairment in ALS occurs in about 40% of patients and occurs early in the disease. This work has generated an important resource of DNA from patients followed longitudinally with detailed neuropsychological profiling. “This is a great honor for my research team, our Irish and international collaborators and the Irish ALS community. Finding the causative genes in small homogeneous populations and looking for protective genes in ethnically mixed populations can help to identify new pathways that lead to neurodegeneration. This award will be used to help to develop our research ideas, with the overall aim of finding pathways in ALS that can be harnessed to develop new treatments,” said Dr. Hardiman. “We are grateful to The ALS Association for their continued support of our work.”
In 1996 The ALS Association in partnership with the American Academy of Neurology inaugurated the Sheila Essey Award for ALS Research to acknowledge and honor an individual actively engaged in ALS research who is making significant contributions in research for the cause, treatment, prevention or cure for amyotrophic lateral sclerosis (ALS). The recipient receives a $25,000 prize to be used specifically for continuing his/her ALS research. Funding of the award is made possible through The Essey Family Fund and The ALS Association.
Images: Top; Dr. Merit Cudkowicz. Bottom; Dr. Orla Hardiman.
©2009 The ALS Association. All rights reserved.
Dr. Merit Cudkowicz, Associate Professor of Neurology at Massachusetts Genera
l Hospital, Boston, Mass., is an international leader of clinical therapeutics in ALS. She is co-founder and co-director of the Northeast ALS Consortium (NEALS) a clinical trials network of 76 clinical sites throughout the U.S. and Canada dedicated to performing academic led clinical trials. The trials network has completed six trials: three phase III efficacy studies (topiramate, creatine and celecoxib) and three phase II studies (coenzyme Q10, sodium phenylbutyrate, arimoclomol).Dr. Cudkowicz is currently playing a leadership role in three clinical trials through this network: ceftriaxone, lithium and arimoclomol in patients with SOD1 mutations.
In 2007 through The Association’s Translational Research Advancing Therapies of ALS (TREAT ALS) program, The Association partnered with NEALS to establish the TREAT ALS/ NEALS clinical network facilitating broader participation in ALS clinical trials. In addition, Dr. Cudkowicz has been advisor to The Association’s pilot clinical trial program, which is currently funded by The Association for the SOD1 antisense trial in familial ALS and has established a repository for patient samples.
Ongoing studies in her group, facilitated by this resource, attempt to find biomarkers or signatures for the disease to allow for earlier diagnosis and improved clinical trials. Furthermore, Dr. Cudkowicz recognizes the importance of encouraging young clinician scientistsin ALS and has mentored, among others, Dr. Aggarawal, recipient of this year’s AAN/ALS Association Clinician Scientist Development Award. Her group has focused on adaptive clinical trial design to identify promising treatments for ALS more rapidly.
“It is an honor to receive this award for my research team at the Massachusetts General Hospital Neurology Clinical Trial Unit and our collaborators in the Northeast ALS consortium. The Sheila Essey award will be used to support a novel approach to more quicklydevelop treatments for people with ALS. The award will help continue our mission to find new treatments for people with ALS,” commented Dr. Cudkowicz.
Dr. Orla Hardiman, Professor of Neurology, Trinity College Institute of Neuroscienc
e, Dublin, Ireland, developed the longest running population based register of ALS in the world. The register is now part of the European ALS group, founded by Dr. Hardiman.Many of her studies in clinical trials, outcome measures and patient care have led to important changes in how people with ALS are cared for. Her group undertook a systematic review of the impact of ethnicity on ALS epidemiology and demonstrated that the frequency of ALS is not uniform across the world. In addition, capitalizing on the relative homogeneity of the Irish population, her group identified a series of novel mutations in angiogenin(involved in formation of blood vessels and also thought to play a role in the protection of motor neurons) linked to some cases of ALS.
Dr. Hardiman is currently part of an international consortium using genome wide technology to identify potential genes linked to sporadic cases of ALS. Dr. Hardiman, funded by The ALS Association, is undertaking a detailed population-based longitudinal survey of cognition in ALS. Her group’s data suggest that cognitive impairment in ALS occurs in about 40% of patients and occurs early in the disease. This work has generated an important resource of DNA from patients followed longitudinally with detailed neuropsychological profiling. “This is a great honor for my research team, our Irish and international collaborators and the Irish ALS community. Finding the causative genes in small homogeneous populations and looking for protective genes in ethnically mixed populations can help to identify new pathways that lead to neurodegeneration. This award will be used to help to develop our research ideas, with the overall aim of finding pathways in ALS that can be harnessed to develop new treatments,” said Dr. Hardiman. “We are grateful to The ALS Association for their continued support of our work.”
In 1996 The ALS Association in partnership with the American Academy of Neurology inaugurated the Sheila Essey Award for ALS Research to acknowledge and honor an individual actively engaged in ALS research who is making significant contributions in research for the cause, treatment, prevention or cure for amyotrophic lateral sclerosis (ALS). The recipient receives a $25,000 prize to be used specifically for continuing his/her ALS research. Funding of the award is made possible through The Essey Family Fund and The ALS Association.
Images: Top; Dr. Merit Cudkowicz. Bottom; Dr. Orla Hardiman.
©2009 The ALS Association. All rights reserved.
FREE WEBINAR: COMPUTER ACCESS FOR PALS
MAY 5, 2009 at 2pm & MAY 20, 2009 at 7pm
The ALS Association is presenting a series of teleconferences about assistive technology and how it can improve a PALS quality of life. These teleconferences are free of charge. May’s subject is "Computer Access for PALS."
Instructions for May 5th Webinar at 2 pm
Meeting Number: 822 215 861
Meeting Password: ATSem2009
Meeting Number: 822 215 861
Meeting Password: ATSem2009
To join this meeting:
1. Go to https://alsa.webex.com/alsa/j.php?J=822215861
2. Enter the meeting password: ATSem2009
3. Click "Join Now".
4. Follow the instructions that appear on your screen to join the teleconference.
IMPORTANT NOTICE: This WebEx service includes a feature that allows audio and any documents and other materials exchanged or viewed during the session to be recorded. By joining this session, you automatically consent to such recordings. If you do not consent to the recording, do not join the session.
To only join the teleconference
Call-in toll-free number (US/Canada): 866-699-3239
Call-in toll number (US/Canada): 1-408-792-6300
Toll-free dialing restrictions: http://www.webex.com/pdf/tollfree_restrictions.pdf
Instructions for May 20th Webinar at 7 pm
Meeting Number: 825 831 354
Meeting Password: ATSem2009
Meeting Number: 825 831 354
Meeting Password: ATSem2009
To join this meeting
1. Go to https://alsa.webex.com/alsa/j.php?J=825831354
2. Enter the meeting password: ATSem2009
3. Click "Join Now".
4. Follow the instructions that appear on your screen to join the teleconference.
IMPORTANT NOTICE: This WebEx service includes a feature that allows audio and any documents and other materials exchanged or viewed during the session to be recorded. By joining this session, you automatically consent to such recordings. If you do not consent to the recording, do not join the session.
To only join the teleconference:
Call-in toll-free number (US/Canada): 866-699-3239
Call-in toll number (US/Canada): 1-408-792-6300
Toll-free dialing restrictions: http://www.webex.com/pdf/tollfree_restrictions.pdf
CLICK HERE to see the information about our webinars on the web.
Monday, April 27, 2009
Bob Costas PSA for the 2009 New York City Walk to Defeat ALS
Bob Costas promoting the 2009 Walk to Defeat ALS in New York City on May 16th.
Wednesday, April 22, 2009
2nd Annual Walk to Defeat ALS in Manhattan on Saturday, May 16th, 11:00 AM
ALS ASSOCIATION GREATER NEW YORK CHAPTER TO HOST 2nd ANNUAL WALK TO DEFEAT ALS IN MANHATTAN – May 16th
***
KIM GIRARDI, WIFE OF NEW YORK YANKEES MANAGER JOE GIRARDI, WILL BE HONORARY CHAIRPERSON
***
Greater New York Chapter Celebrating their 15th Anniversary in 2009
DATE:
Saturday, May 16th
TIME:
11:00 AM
PLACE:
Start of Walk - Hudson River Park’s Pier 46
Charles Street and the West Side Highway
End of Walk - Clinton Cove at Pier 96
57th Street and the West Side Highway
New York City
To register for the New York City Walk to Defeat ALS Click Here.
To Donate Now Click Here.
***
KIM GIRARDI, WIFE OF NEW YORK YANKEES MANAGER JOE GIRARDI, WILL BE HONORARY CHAIRPERSON
***
Greater New York Chapter Celebrating their 15th Anniversary in 2009
The ALS Association Greater New York Chapter will host their 2nd Annual Walk to Defeat ALS in Manhattan on Saturday, May 16th, 11:00 AM, at Hudson River Park’s Pier 46 (Charles Street and the West Side Highway) in Manhattan. Last year’s Greater New York Chapter’s Walks raised over $1.4 million dollars and had over 7,500 participants.
Kim Girardi, wife of New York Yankees Manager Joe Girardi, will be the honorary chairperson for the 2nd Annual Manhattan Walk to Defeat ALS. Joe Girardi was honored in 2007 with the Chapter’s Lou Gehrig Sports Award. Over 2,000 participants are expected to attend.
The walk will span 2.75 miles and will end at Clinton Cove, Pier 96 at 57th Street. At Clinton Cove, there will be family activities such as face painting, live music and other fun and games. The area is wheelchair and stroller accessible. Dogs must be leashed.
For more information on the walk, contact Allison Lardner at (212) 619-1400 or walk@als-ny.org.
Proceeds from the event will go to The ALS Association Greater New York Chapter. The ALS Association is the only national not-for-profit voluntary health organization whose sole mission is to find a cure for amyotrophic lateral sclerosis (Lou Gehrig’s disease); improve the lives of people with ALS; and advocate issues of importance to the ALS community. For more information on the Greater New York Chapter and their programs and services, please visit www.als-ny.org
Kim Girardi, wife of New York Yankees Manager Joe Girardi, will be the honorary chairperson for the 2nd Annual Manhattan Walk to Defeat ALS. Joe Girardi was honored in 2007 with the Chapter’s Lou Gehrig Sports Award. Over 2,000 participants are expected to attend.
The walk will span 2.75 miles and will end at Clinton Cove, Pier 96 at 57th Street. At Clinton Cove, there will be family activities such as face painting, live music and other fun and games. The area is wheelchair and stroller accessible. Dogs must be leashed.
For more information on the walk, contact Allison Lardner at (212) 619-1400 or walk@als-ny.org.
Proceeds from the event will go to The ALS Association Greater New York Chapter. The ALS Association is the only national not-for-profit voluntary health organization whose sole mission is to find a cure for amyotrophic lateral sclerosis (Lou Gehrig’s disease); improve the lives of people with ALS; and advocate issues of importance to the ALS community. For more information on the Greater New York Chapter and their programs and services, please visit www.als-ny.org
DATE:
Saturday, May 16th
TIME:
11:00 AM
PLACE:
Start of Walk - Hudson River Park’s Pier 46
Charles Street and the West Side Highway
End of Walk - Clinton Cove at Pier 96
57th Street and the West Side Highway
New York City
To register for the New York City Walk to Defeat ALS Click Here.
To Donate Now Click Here.
Researcher uses EEG technology to form words
Mackler, who has ALS, is one of just 3 to 4 in the world to use the software...
Read More at The Daily Pennsylvanian
Read More at The Daily Pennsylvanian
Friday, April 10, 2009
A Reason for Hope
by Kristina DeSantis
Danielle Conway-Mason never had the chance to get to know her father. He died of ALS when she was an infant and everything she knows about him is through pictures and stories. In fact, Danielle never even knew how her father died until she was in high school. Her mother felt alone with the disease. At the time there weren’t any local support groups, patient service programs or Walks to Defeat ALS. No one talked openly about Lou Gehrig’s because it felt like such a hopeless disease.
This is the reason The Walks to Defeat ALS are some important for Danielle and her family. Not only because the Walks spread awareness and raise funds for patient service programs and research, but because it gives them hope and a reason to celebrate. The Walks allow them the opportunity to honor her father’s life. They also celebrate all the exciting progress that has been made. Nearly 30 years after Danielle lost her father, so much has changed. There are support groups to talk about living with ALS and losing a loved one.
Each day we learn more about what causes this devastating disease and we get closer to finding a cure. There is equipment to make everyday life easier on patients and their caregivers. And now we have the Walk to Defeat ALS.
For more information, to register a team for the Walk to Defeat ALS in your region or donate to a Walk team, Click Here.
ALS Association Home Page.
Danielle Conway-Mason never had the chance to get to know her father. He died of ALS when she was an infant and everything she knows about him is through pictures and stories. In fact, Danielle never even knew how her father died until she was in high school. Her mother felt alone with the disease. At the time there weren’t any local support groups, patient service programs or Walks to Defeat ALS. No one talked openly about Lou Gehrig’s because it felt like such a hopeless disease.
This is the reason The Walks to Defeat ALS are some important for Danielle and her family. Not only because the Walks spread awareness and raise funds for patient service programs and research, but because it gives them hope and a reason to celebrate. The Walks allow them the opportunity to honor her father’s life. They also celebrate all the exciting progress that has been made. Nearly 30 years after Danielle lost her father, so much has changed. There are support groups to talk about living with ALS and losing a loved one.
Each day we learn more about what causes this devastating disease and we get closer to finding a cure. There is equipment to make everyday life easier on patients and their caregivers. And now we have the Walk to Defeat ALS.
For more information, to register a team for the Walk to Defeat ALS in your region or donate to a Walk team, Click Here.
ALS Association Home Page.
Tuesday, April 7, 2009
Fern Cohen Discusses Blogging vs. Twitter
I have used my blog for years to help raise awareness of ALS/Lou Gehrig's Disease, and to let people know the struggles of a person with ALS [referred to as a "PALS"]. But, blogging has its limitations. The biggest burden is this: when you blog, you are expected to update with a meaty multi-paragraph entry that, for a PALS like me, can take a lot of time and energy. So, at least in my case, I try to update once or twice a week, and limit my blog post to very important matters that really impacted my week, or a specific topic of interest. But sometimes I would like to shout out little challenges and triumphs. For instance, last week my aide and I waited for Access-a-Ride [NYC's para-transit service] for two hours! And I was without TV for three days because of a broken cable box [a major event for a PALS home all day]. I want to shout out about these "grrr" incidents as they are happening or soon after. On the positive side, I want the world to know about an inspiring PALS, and new friend I just met, or a research development that brings us a step closer to a cure.
In the past I would make notes that I put together into a blog post that week. Often, these events would lose their impact when it came time to blog. Then I found Twitter. On Twitter, I could "tweet" short messages as often as I wanted. What is Twitter and what is a tweet? Twitter is "micro-blogging. It is the McDonald's of blogging -- it's quick, short, and sweet. Entries, or updates are called "tweets". A tweet is limited to 140 characters, so I am forced to keep it short. I've learned how to make my message less wordy, which has been a challenging exercise for me. I can tweet from my computer, or I can tweet from a mobile device. As with my blog, I have followers [subscribers to my "tweets"], and my "tweets" appear on my Facebook page as well, so my Facebook friends see it immediately too.Of course, when I tweet, I include a link to my blog, so my activity on Twitter has gotten me many new blog readers. And I have actually made new friends among my fellow tweeters, or is it twitterers? I will soon tweet about my team for the Walk to Defeat ALS, hoping to get my Twitter followers to make donations, or even to join my team to walk. I am also involved in rabbit rescue, so I tweet about that as well. I have also convinced some of my followers to sign petitions for disability-related causes. If you want to get the word out about anything, especially of a time-sensitive nature, or if you don't want to commit to blogging, try Twitter.
You are also welcome to follow my Twitter. You can see my profile, and click "follow" at http://twitter.com/fec139.
Of course, my blog is still at http://xr.com/fern
Saturday, April 4, 2009
Walk to Defeat ALS™
We are in the heart of Walk season and the staff is very excited about the 2009 year! We love welcoming back many old teams and making friends with new teams. Last year the Walks raised over $1.4 million and our goal is to raise the same amount this year.The funds raised by Walkers support patient service programs and cutting-edge research. So involvement in the Walk to Defeat ALS™ is not only about a fun day with your friends and family, but it is important to patients and their families!
To get involved in the Walk to Defeat ALS please visit www.alswalks.org or contact Allison or Kristina at 800.672.8857.
We hope to see you at one of the Walks!
Sunday, April 26th- Along the Promenade, Long Branch, NJ
Sunday, May 3rd – Alvin P. Williams Memorial Park, Woodbridge, NJ
Saturday, May 16th- Hudson River Park, New York, NY
Sunday, June 7th- Saddle River County Park, Saddle Brook, NJ
Saturday, Sept. 12th- Eisenhower Park, Long Island, NY
**Westchester Walk to TBD
Sunday, May 3rd – Alvin P. Williams Memorial Park, Woodbridge, NJ
Saturday, May 16th- Hudson River Park, New York, NY
Sunday, June 7th- Saddle River County Park, Saddle Brook, NJ
Saturday, Sept. 12th- Eisenhower Park, Long Island, NY
**Westchester Walk to TBD
Thursday, April 2, 2009
The ALS Association Certifies ALS Clinic on Long Island as the 34th Center of Excellence in the United States
By Gary Wosk, Staff Writer
The ALS Association has certified the ALS clinic at Stony Brook University Hospital in East Setauket, N.Y., as its 34th Center of Excellence SM in the nation.
After a comprehensive review of its medical treatment, rehabilitation techniques and psychological support, The Association concluded that the Stony Brook ALS Center, which opened in 2002 and is located on Long Island, is providing the best care possible to those fighting Lou Gehrig’s Disease.
“The team approach at the Stony Brook ALS Center provides the highest quality of care for people living with ALS and their families,” said Sharon Matland, vice president of patient services for The Association. “We are extremely proud to welcome the center into our prestigious family of Centers of Excellence.”
People with ALS who attend the center once every three months are seen within the span of 3-l/2 hours by each professional member of a multidisciplinary team led by the center’s medical director, Dr. Rahman Pourmand. The team includes a representative of the Patient Services Department of The Association’s Greater New York Chapter. Other team members specialize in occupational therapy, physical therapy, nursing, speech, social work and nutrition.
The chapter also provides the center with funding and is committed to bringing quality care to patients on Long Island.
“We are very pleased by this news and very grateful to Dr. Pourmand and the Stony Brook ALS clinical team for their commitment to achieving this recognition,” said Dorine Gordon, president and CEO of the chapter. “The Stony Brook ALS Center is one of 34 ALS Association Certified Centers of Excellence in the country and the only one of its kind on Long Island.”
Pourmand, professor of nuerology and director of the Neuromuscular Disease Center at Stony Brook, has directed the center since 2003.
“We are very excited about becoming an ALS Association Certified Center of Excellence,” Pourmand said. “Getting certification for the Stony Brook ALS Center required intensive evaluation that has very specific criteria. Our entire multidisciplinary team of ALS specialists has met those requirements. I thank the entire team for their devotion to help us obtain this goal. The stam
p of approval by The ALS Association means that our patients get the highest quality clinical care.”
Pourmand’s team will literally go the extra mile in making sure that each patient is receiving first-class care.
“I am very proud that our clinic at Stony Brook has been granted Certified Center of Excellence status by the ALS Association,” said Adele Marano, director of patient services for the chapter. “It is a testament to our clinical team’s dedication. The staff’s commitment extends beyond the four walls of the clinic. They go into patient homes to provide care, follow-up visits and counseling. This is a well-deserved honor recognizing the hard work they put into the comprehensive care for people with ALS.”
There are many pluses to receiving care at the center including a significant reduction in stress since most patients’ needs are met on the same day at one location.
Another very important benefit is that in this collaborative environment “the team offers each person living with ALS an individualized plan that is best suited to his or her needs and that results in an enhanced quality of life,” Matland said.
Patients play an active role at the center in determining their treatment plan, and quickly bond with medical professionals.
“I’m so excited that this has finally happened,” said Theresa Donovan-Imperto, RN, nurse coordinator at Stony Brook ALS Center. “The team at Stony Brook deserves this honor. They are a devoted group of professionals helping people with ALS partake in decisions about their future and their battle with this disease, standing by their side throughout their ordeal. The team becomes an extended part of the family doing only what is best for ALS patients. This is a testament to their dedication to those living with ALS.”
The concept for this center was first proposed in 2001 to the chapter by Chris Pendergast, who has lived with ALS since 1994. His Ride for Life group has raised money for the center by sponsoring such fundraisers as The Long Island Educators and Health Care Professionals Cup, an annual golf outing. In 2008, the chapter presented the center with a check for a grant made possible by the group.
“The care is a marked improvement over the judicial care usually given patients at non-center facilities, said Pendergast in a hospital publication. “Here we get all of our medical and support needs addressed by one focused team. The clinic has evolved our ALS care into the 21st century.”
Other Centers of Excellence in the state of New York include the ALS Center at SUNY Upstate Medical University in Syrcacuse and the Beth Israel ALS Center in New York City.
The mission of The Association’s Center Program is to define, establish and support a national standard of care in the management of ALS. The objective of the program is to encourage and provide that state-of-the-art care.
Pictured: The Stony Brook ALS Center. Dr. Rahman Pourmand.
Click to go back to ALS Association Home Page.
The ALS Association has certified the ALS clinic at Stony Brook University Hospital in East Setauket, N.Y., as its 34th Center of Excellence SM in the nation.
After a comprehensive review of its medical treatment, rehabilitation techniques and psychological support, The Association concluded that the Stony Brook ALS Center, which opened in 2002 and is located on Long Island, is providing the best care possible to those fighting Lou Gehrig’s Disease.
“The team approach at the Stony Brook ALS Center provides the highest quality of care for people living with ALS and their families,” said Sharon Matland, vice president of patient services for The Association. “We are extremely proud to welcome the center into our prestigious family of Centers of Excellence.”
People with ALS who attend the center once every three months are seen within the span of 3-l/2 hours by each professional member of a multidisciplinary team led by the center’s medical director, Dr. Rahman Pourmand. The team includes a representative of the Patient Services Department of The Association’s Greater New York Chapter. Other team members specialize in occupational therapy, physical therapy, nursing, speech, social work and nutrition.
The chapter also provides the center with funding and is committed to bringing quality care to patients on Long Island.
“We are very pleased by this news and very grateful to Dr. Pourmand and the Stony Brook ALS clinical team for their commitment to achieving this recognition,” said Dorine Gordon, president and CEO of the chapter. “The Stony Brook ALS Center is one of 34 ALS Association Certified Centers of Excellence in the country and the only one of its kind on Long Island.”
Pourmand, professor of nuerology and director of the Neuromuscular Disease Center at Stony Brook, has directed the center since 2003.
“We are very excited about becoming an ALS Association Certified Center of Excellence,” Pourmand said. “Getting certification for the Stony Brook ALS Center required intensive evaluation that has very specific criteria. Our entire multidisciplinary team of ALS specialists has met those requirements. I thank the entire team for their devotion to help us obtain this goal. The stam
p of approval by The ALS Association means that our patients get the highest quality clinical care.”Pourmand’s team will literally go the extra mile in making sure that each patient is receiving first-class care.
“I am very proud that our clinic at Stony Brook has been granted Certified Center of Excellence status by the ALS Association,” said Adele Marano, director of patient services for the chapter. “It is a testament to our clinical team’s dedication. The staff’s commitment extends beyond the four walls of the clinic. They go into patient homes to provide care, follow-up visits and counseling. This is a well-deserved honor recognizing the hard work they put into the comprehensive care for people with ALS.”
There are many pluses to receiving care at the center including a significant reduction in stress since most patients’ needs are met on the same day at one location.
Another very important benefit is that in this collaborative environment “the team offers each person living with ALS an individualized plan that is best suited to his or her needs and that results in an enhanced quality of life,” Matland said.
Patients play an active role at the center in determining their treatment plan, and quickly bond with medical professionals.
“I’m so excited that this has finally happened,” said Theresa Donovan-Imperto, RN, nurse coordinator at Stony Brook ALS Center. “The team at Stony Brook deserves this honor. They are a devoted group of professionals helping people with ALS partake in decisions about their future and their battle with this disease, standing by their side throughout their ordeal. The team becomes an extended part of the family doing only what is best for ALS patients. This is a testament to their dedication to those living with ALS.”
The concept for this center was first proposed in 2001 to the chapter by Chris Pendergast, who has lived with ALS since 1994. His Ride for Life group has raised money for the center by sponsoring such fundraisers as The Long Island Educators and Health Care Professionals Cup, an annual golf outing. In 2008, the chapter presented the center with a check for a grant made possible by the group.
“The care is a marked improvement over the judicial care usually given patients at non-center facilities, said Pendergast in a hospital publication. “Here we get all of our medical and support needs addressed by one focused team. The clinic has evolved our ALS care into the 21st century.”
Other Centers of Excellence in the state of New York include the ALS Center at SUNY Upstate Medical University in Syrcacuse and the Beth Israel ALS Center in New York City.
The mission of The Association’s Center Program is to define, establish and support a national standard of care in the management of ALS. The objective of the program is to encourage and provide that state-of-the-art care.
Pictured: The Stony Brook ALS Center. Dr. Rahman Pourmand.
Click to go back to ALS Association Home Page.
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