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Megan Kallio's Fundraiser:

UMass ALS Cellucci Fund 2015 Boston Marathon Team

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Megan Kallio

THE STORY:

Last summer, I like many of you, took the Ice Bucket Challenge for the ALS Association to fight the deadly neurogenerative disease, amyotrophic lateral sclerosis, better known as Lou Gehrig’s Disease.  The intent of the Ice Bucket Challenge was to raise money to research, find a cure and to create public awareness.  I intend to continue the spirit of that challenge by joining the UMass ALS Cellucci Fund Boston Marathon 2015 Team and running the historic Boston Marathon to raise funds for ALS Research.

I am dedicating my efforts in memory of Cheryl Alderman, a family friend, who recently lost her 7-month battle with the disease.  Like so many others, Cheryl was a young, vibrant person in the prime of her life.  She was a loving wife, mother, daughter, sister, friend, tap dancer extraordinaire who was loved and respected not only by her family and friends but by those who had the honor to work with her.  She left a legacy of love and light and I am honored to be able to carry her strengths with me in my fundraising, training and running. 

 TOGETHER we can keep the spirit of the Ice Bucket Challenge going and work toward a CURE!

 

THE UMASS MEMORIAL FOUNDATION INC wrote -

THE CELLUCCI FUND

In recognition of the critical need for new treatments for ALS, amyotrophic lateral sclerosis or Lou Gehrig’s Disease, the UMass ALS Cellucci Fund—formerly known as the UMass ALS Champion Fund—is a movement to drive awareness and funding for the ALS breakthroughs happening at UMass Medical School (UMMS) and in the laboratory of Robert H. Brown, Jr., DPhil, MD, one of the world’s leading and most promising ALS researchers.

The Cellucci Fund aims to help Dr. Brown and his colleagues pursue ALS research leads and breakthroughs right now that might otherwise take years to attract funding from traditional sources. As a result, this Fund will make researchers at UMMS better prepared to “seize the moment” when highly promising ALS discoveries are made.

In 2011, UMMS and Dr. Brown were joined in this effort by former Governor of Massachusetts and Ambassador to Canada, A. Paul Cellucci. Governor Cellucci announced that January that he had been diagnosed with ALS and was being treated at UMMS by Dr. Brown. News of Cellucci’s diagnosis sparked an outpouring of support from friends and colleagues across the Commonwealth and the country, including fellow former governors and other elected officials. Governor Cellucci chose to use his story as a catalyst to support ALS research at Massachusetts’ public Medical School through the establishment of the UMass ALS Champion Fund, now the Cellucci Fund.

“I am proud to continue my career in public service by leading the UMass ALS Champion Fund,” Cellucci said in at the time. “A champion helps to deliver great victories, and Dr. Brown is a true champion of ALS research. But, victories are a team effort. Dr. Brown and his colleagues at UMass Medical School need our support.” Cellucci died from complications of the disease on June 8, 2013. He was 65. In 2014, the fund was renamed the UMass ALS Cellucci Fund to honor his commitment to this cause.

Dr. Brown, the Leo P. and Theresa M. LaChance Chair in Medical Research and chair of the Department of Neurology at UMass Medical School and UMass Memorial Medical Center, is widely recognized as a pioneer in neurodegenerative disease research and for more than 30 years has dedicated his career to unlocking the secrets of ALS, a degenerative disorder that causes progressive muscle weakness, leading to paralysis and eventually death. There is currently no treatment to stop or reverse ALS. Dr. Brown has been a leading visionary for ALS treatment and part of nearly every fundamental ALS breakthrough to-date, including the identification of mutations in a gene that is responsible for the rare, familial form of the disease. Dr. Brown’s work has opened a window into ALS that has drastically changed the research landscape and provided patients and loved ones touched by ALS with something very rare: hope.

The Cellucci Fund aims to extend and supplement the already great fundraising initiatives benefiting UMMS. Dr. Brown and team has been fortunate to receive support from a diversity of groups, including the Massachusetts-based Angel Fund and national partner CVS Pharmacy, both of which have been raising money for UMMS and acting as champions in the fight against ALS for more than 10 years. The Cellucci Fund will complement and extend those funding sources to augment the overall effort..

Now is the time. There is hope. But, victories are a team effort. Join us in the fight back against ALS.

DR. BROWN vs ALS

Robert H. Brown Jr., DPhil, MD, the Leo P. and Theresa M. LaChance Chair in Medical Research and chair of the Department of Neurology at the University of Massachusetts Medical School (UMMS) and UMass Memorial Medical Center, is an internationally known researcher and physician leading the quest to cure neurodegenerative and neuromuscular diseases like amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.

Renowned for his groundbreaking basic and clinical research on the inherited and genetic basis of neurodegenerative and neuromuscular diseases, Dr. Brown has a record of significant discoveries in identifying gene defects that elucidate how ALS causes neurons to die. In 1993, a team of researchers led by Dr. Brown discovered the first gene linked to the inherited form of ALS, called SOD1.

Each year, it is estimated that 5,000 people in the United States are newly diagnosed with ALS, a progressive, neurodegenerative disorder affecting the motor neurons in the central nervous system. As motor neurons die, the brain’s ability to send signals to the body’s muscles is compromised, leading to the loss of voluntary muscle movement, paralysis and eventually death from respiratory failure. The average survival rate for patients with ALS is three to five years.

ALS is a fundamentally untreatable disease, and its cause is still not entirely understood. About 10 percent of ALS cases arise because of inherited genetic defects. The cause of the remaining 90 percent of cases, known as sporadic ALS, is still unknown. One hypothesis is that in these cases, the disease is triggered by a combination of genetic susceptibility and exposure to one or more adverse environmental factors. For example, there is growing evidence that head trauma may predispose patients to ALS and related cognitive decline.

Development of new therapeutics to treat ALS depends on better understanding how the disease works. In October 2010, Brown and his team at the University of Massachusetts Medical School reported evidence suggesting that the SOD1 gene, which is implicated in 20 percent of inherited cases of familial ALS, also plays a part in the more common, sporadic forms of the disease. Brown’s research showed that under certain conditions and absent a mutation in the gene, a normal SOD1 protein can have the same toxic characteristics that are found in mutated forms of the gene. In select cases of sporadic ALS, these toxic proteins are present.

When he began researching ALS over 20 years ago, Brown believed that one day his work to identify the genes implicated in the inherited form of ALS would yield new insights into the more common, sporadic form of the disease. These findings are the first evidence that genes implicated in inherited ALS also play a role in the sporadic form of the disease.

Dr. Brown joined the University of Massachusetts Medical School as chair of neurology in May 2008, in part, because of the work of its internationally known scientists unraveling the mechanisms that turn genes on and off. UMMS is home to some of the world’s leading researchers in the field of RNA biology (RNA interference or “RNAi,” is a gene-silencing mechanism for which UMMS Professor Craig C. Mello shared the Nobel Prize in Physiology or Medicine in 2006), which Dr. Brown believes holds immense potential as a therapeutic for neurodegenerative diseases such as ALS, with its ability to create and regulate the complex patterns of gene expression. Initiated by Dr. Brown, an ALS-related arm of these efforts includes a program to silence the activity of mutant ALS genes that make the toxic proteins that trigger the disease. Working in conjunction with researchers at the Gene Therapy Center at UMMS, Dr. Brown is accelerating efforts to devise novel gene therapies that can access the brain and spinal cord for diseases such as ALS.

Shortly after joining UMMS, Brown and his colleagues identified a new genetic mutation linked to ALS which is estimated to account for 5 to 10 percent of inherited cases. Discovery of this mutation, called FUS/TLS, was named one of the most cited papers from 2008 to 2010 by Thomson Reuters. Though it’s still not clear how the FUS/TLS mutation causes ALS, scientists know that the FUS/TLS protein plays a number of roles in the neuron cell. In healthy neuron cells, the FUS/TLS protein is located predominately in the cell nucleus. Samples from patients with the FUS/TLS mutation show a concentration of the FUS/TLS protein in the cytoplasm of the cell, however, outside of the nucleus. This misplaced protein is believed to contribute to cell death in neurons.

Brown has also identified disease genes in other inherited neurodegenerative and neuromuscular diseases such as hyperkalemic periodic paralysis, Miyoshi muscular dystrophy and hereditary sensory neuropathy.

Dr. Brown and his team have been very fortunate to receive support from a diversity of groups, including the locally-based organization, Angel Fund, and national partner, CVS Pharmacy, both of which have been raising money for ALS research for more than 10 years.

Outside of the lab, Dr. Brown is known as a compassionate clinician and physician, caring for patients suffering from neurodegenerative diseases. He is well known for his work with patient advocacy groups and charitable organizations, such as Project ALS and the ALS Therapy. He is also a founding member of the Northeast ALS Study Consortium and is president of the ALS Therapy Alliance’s Board of Directors.

Dr. Brown has received many honors for his extraordinary commitment to finding cures for neuromuscular diseases, including induction into the Institute of Medicine. He was also the recipient of the National A.L.S. Foundation Fellowship from 1980 to 1982, Plenary Lecturer at the American Academy of Neurology in 2002 and 2007, and is a member of the American Neurological Association. In 2011 he was named a member of the Association of American Physicians (AAP).

Dr. Brown graduated from Amherst College with a degree in biophysics in 1969. He went on to complete a doctorate of philosophy in neurophysiology at Oxford University and received his medical degree from Harvard Medical School in 1975. Following medical school, Dr. Brown completed his internship in internal medicine at Peter Brent Brigham Hospital and his residence in neurology at Massachusetts General Hospital. In 1983, Dr. Brown completed a research fellowship in neuroscience at Children’s Hospital in Boston.

In 1975, Brown joined Harvard Medical School as a clinical fellow and rose to the rank of professor of neurology in 1998, while also serving as Director of the Day Neuromuscular Laboratory and of the Muscular Dystrophy Association Clinic. Internationally recognized for its research and clinical care programs, Brown founded the Day Neuromuscular Laboratory in 1984 to investigate neuromuscular diseases. Dr. Brown continues his work with the Day Neuromuscular Laboratory today at the University of Massachusetts Medical School.

www.umassals.com

https://www.facebook.com/umassals

@umassals

 

$8,697

MONEY RAISED
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  • Charles Fischer

    $100

  • Jan & Tom Kallio

    $500

  • Jeff & JoAnne Kavin

    $500

  • Kristin Kallio

    $100

  • Jack, Kelley, John

    $100

  • Jen and Ross

    $50

  • Anonymous

    $50

  • Ann-Marie Rodriguez

    $25

  • Bonnie Brathwaite

    $100

  • George and Jean Nilsson

    $100

  • Lisa Sarno

    $100

  • The Thompson Family

    $300

  • Pulvers, Pulvers, Thompson & Friedman, LLP

    $300

  • The Horowitz Family

     

  • Stacey Rosenbluth

     

  • Gershman Family

     

  • Linett Family

     

  • Jon and Sondra Rubin

     

  • Lynn Steller

    $50

  • Nancy Antin

    $100

  • Dan & Chrissy Lavin

    $100

  • Jill and Jason Gluck

    $1,000

  • Joe Frank

    $100

  • laura stamm

     

  • The Block Family

    $50

  • The Hauben Family

    $100

  • The van den Broek family

     

  • The Grossman Family

    $500

  • Jeff, Harry, Meg & Bob

    $100

  • John Talbot

    $100

  • Nick Berger & Family

    $100

  • The Arquit Family

    $200

  • Jack Birchenough

     

  • The Zeplin Family

    $100

  • Shane Coppola

    $100

  • The Massaro Family

     

  • The Kleins

    $150

  • Liam McEnroe

    $100

  • Aaron Aboodi

     

  • The Jaeger Family

    $500

  • Sharon and Jay

    $300

  • The Regan Family

    $100

  • Mike White

     

  • Halloran Family

     

  • The Dodge Family

    $100

  • Mimi & Pop

    $100

  • The Lefebvre Family

     

  • Pamela Griffin

     

  • Jim, Bethany, Fiona & Holden Kinahan

     

  • Anonymous

     

  • John Gasidlo

    $100

  • Ric and Suz Jackson

    $100

  • Jason and Deb Daly

    $100

  • The Abrams Family

     

  • Laura and Mike Toner

    $262

  • Judy Femino

    $100

  • Clarke, Elizabeth & Kara Alderman

    $100

  • The Dougherty Family

    $100

  • The Roth Family

     

  • Deborah Lohnes

    $50

  • Erinn & Mike Borowiec

    $25

  • Michael and Kathleen Tipping

    $50

  • Jamberry Fundraiser

    $75

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109% Raised of $8,000 Goal

The Team: $49,910 TOTAL RAISED SO FAR

Fundraiser Title

Tammie Meisner

Amount Raised

$10,000

 

130% Raised of $7,700 Goal

Fundraiser Title

Melissa Davis

Amount Raised

$9,088

 

101% Raised of $9,000 Goal

Fundraiser Title

Megan Kallio

Amount Raised

$8,697

 

109% Raised of $8,000 Goal

Fundraiser Title

Colin Pagnam

Amount Raised

$8,645

Fundraiser Title

Kim Kendrick

Amount Raised

$8,425

 

99% Raised of $8,500 Goal

Fundraiser Title

Thin Hom

Amount Raised

$4,987

 

62% Raised of $8,000 Goal

Fundraiser Title

THE UMASS MEMORIAL FOUNDATION INC

Amount Raised

$68

 

0% Raised of $45,000 Goal

Donor Comments

Jamberry Fundraiser

Jamberry Fundraiser

DONATION: $75

2 years ago

Michael and Kathleen Tipping

Michael and Kathleen Tipping

DONATION: $50

2 years ago

Erinn & Mike Borowiec

Erinn & Mike Borowiec

DONATION: $25

2 years ago

Deborah Lohnes

Deborah Lohnes

DONATION: $50

2 years ago

The Roth Family

The Roth Family

2 years ago

The Dougherty Family

The Dougherty Family

DONATION: $100

2 years ago

Clarke,  Elizabeth & Kara Alderman

Clarke, Elizabeth & Kara Alderman

DONATION: $100

In memory of Cheryl F. Alderman 2 years ago

Judy Femino

Judy Femino

DONATION: $100

Good luck Megan!!! 3 years ago

Laura and Mike Toner

Laura and Mike Toner

DONATION: $262

You go Megan!!! 3 years ago

The Abrams Family

The Abrams Family

3 years ago