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2012 Liberty Mutual Invitational benefiting Uplifting Athletes

Z2 Event feed - Tue, 2012-07-10 01:00

Please join BC Linebacker Mark Herzlich for a celebrity golf tournament on July 10, 2012, at Pine Hills Golf Club.  Proceeds will equally benefit  the Boston College Chapter of Uplifting Athletes (which funds Ewing's sarcoma research in honor of Mark).

The donation per foursome is $2000.  The event will start at 11 am, followed by a dinner, awards ceremony and auction.  Each foursome will be joined by a celebrity guest.  Celebrities Include: Boby Orr, Tedy Bruschi, Curt Schilling, Troy Brown, Ken Hodge, Max Lane...and many more New England celebrities and athletes!

We will be very grateful if you will take part in this charity event by donating an auction item, making a donation for our player “goodie bags,” sponsoring a hole ($500) or buying a foursome.

You may be aware that Mark Herzlich, an extremely promising football player at Boston College, was stricken with a very rare and deadly cancer called Ewings Sarcoma. Boston College formed a chapter of Uplifting Athletes (www.upliftingathletes.org) in order to raise charitable gifts that support Ewings Sarcoma research in Mark’s honor. Now Mark is linebacker for the New York Giants.

Please send your auction donation to  Jayme Parker -- 38 Daedalus Circle,  Scituate, MA  02066.  For more information please contact Jayme Parker at jparker@nesn.com.

Uplifting Athletes is a 501(c)3 tax exempt organization. Gifts are tax-deductible to the extent permitted by law: Federal Tax ID Number is 34-1986485

07/10/2012 11:00 AM - 07:00 PM ET

To register, check the Registration Link

Categories: Events

STAT3 Mutations ID'd in Rare Lymphoproliferative Disorder - Doctors Lounge

Google Rare Disease Feed - 5 hours 35 min ago

STAT3 Mutations ID'd in Rare Lymphoproliferative Disorder
Doctors Lounge
"In conclusion, STAT3 is frequently mutated in large granular lymphocytic leukemia, highlighting key steps in the molecular pathogenesis of this rare disease," the authors write. "Structural and functional data suggest that the observed mutations ...

Categories: Rare Disease

Flesh-eating bacteria hospitalizes another victim: New SC mom - Los Angeles Times

Google Rare Disease Feed - 7 hours 15 min ago

Daily Mail

Flesh-eating bacteria hospitalizes another victim: New SC mom
Los Angeles Times
By Rene Lynch The rare disease commonly known as flesh-eating bacteria has claimed another victim: a South Carolina woman who had just given birth to a healthy set of twins and who noticed an unusual spot on the back of her leg.
New mom in South Carolina fighting flesh-eating bacteriaYahoo! News Blogs (blog)
New South Carolina mom is latest victim of flesh-eating bacteriaDetroit Free Press
Cause and Prevention of Newly Publicized Flesh-Eating Infection - Necrotizing ...PR Web (press release)
msnbc.com (blog) -WRAL.com
all 400 news articles »
Categories: Rare Disease

Children With Rare, Incurable Brain Disease Improve After Gene Therapy - Science Daily (press release)

Google Rare Disease Feed - 7 hours 46 min ago

Scientist

Children With Rare, Incurable Brain Disease Improve After Gene Therapy
Science Daily (press release)
ScienceDaily (May 16, 2012) — Using gene transfer techniques pioneered by University of Florida faculty, Taiwanese doctors have restored some movement in four children bedridden with a rare, life-threatening neurological disease.
Gene Therapy for Brain DiseaseScientist
Clinical Data Published for a Phase I AADC-deficiency Trial Using a Gene ...MarketWatch (press release)

all 15 news articles »
Categories: Rare Disease

WATCH: Boy With Rare Disease Meets Winter the Dolphin - One Green Planet (blog)

Google Rare Disease Feed - 9 hours 8 min ago

WATCH: Boy With Rare Disease Meets Winter the Dolphin
One Green Planet (blog)
Damian, an eight-year-old boy has a rare condition called Proximal Femoral Focal Discrepancy, which caused his left leg to be shorter than his right. As a result, he has had to wear a prosthetic device on his left leg for most of his life.

and more »
Categories: Rare Disease

Grace City family challenged by sons' rare disease - Jamestown Sun

Google Rare Disease Feed - 10 hours 10 min ago

Grace City family challenged by sons' rare disease
Jamestown Sun
Specialists at The University of Minnesota diagnosed him with pantothenate kinase-associated neurodegeneration (PKAN), a rare genetic disease for which there is currently no known cure. According to Oregon Health & Science University in Portland, Ore., ...

Categories: Rare Disease

The coach's son: Extremely rare disease challenges family - Signal

Google Rare Disease Feed - 14 hours 16 min ago

The coach's son: Extremely rare disease challenges family
Signal
He wondered if Blake would be able to fight a disease so rare, it even left doctors perplexed. “We think it's a miracle to take him through this,” Garrick says, “and he opened his eyes, and it was just amazing.” Blake, who turned 2 last November, ...

Categories: Rare Disease

Colorado Adds 'Bubble Boy Disease' To List Of Newborn Tests - CBS Local

Google Rare Disease Feed - Wed, 2012-05-16 22:54

CBS Local

Colorado Adds 'Bubble Boy Disease' To List Of Newborn Tests
CBS Local
This year the state added what's often called “Bubble Boy Disease” to its list of newborn tests. The new screening just started on Feb. 1 and one baby has already been diagnosed with the rare disease. While having a child with the immune deficiency ...

and more »
Categories: Rare Disease

SF Woman Uses MPS Disorder To Inspire Others - KDLT News

Google Rare Disease Feed - Wed, 2012-05-16 22:25

KDLT News

SF Woman Uses MPS Disorder To Inspire Others
KDLT News
Kendra Gottsleben is battling a rare disease, but she's not letting that stop her. Instead, she's using her unique situation to help others and that's what makes Kendra Someone You Should Know. “You've got to have some pizzazz, just a little sparkle,” ...

Categories: Rare Disease

Woman with flesh-eating disease asks for a book - Catholic Online

Google Rare Disease Feed - Wed, 2012-05-16 16:44

Sci-Tech Today

Woman with flesh-eating disease asks for a book
Catholic Online
On May 4, she was diagnosed with the rare disease and flown to Augusta for special treatment. Copeland is facing a long recovery from her amputation, failure of the kidney, and organ damage which was caused by the infection. "She's going to be here for ...
Flesh-Eating Bacteria Risk Rare Despite New CaseSci-Tech Today
How common is flesh-eating bacteria?New York Daily News
With video: Flesh-eating bacteria risk rare despite Georgia student's caseDetroit Free Press
Daily Beast -WLS
all 297 news articles »
Categories: Rare Disease

Children with rare, incurable brain disease improve after gene therapy - University of Florida

Google Rare Disease Feed - Wed, 2012-05-16 14:08

Scientist

Children with rare, incurable brain disease improve after gene therapy
University of Florida
Using gene transfer techniques pioneered by University of Florida faculty, Taiwanese doctors have restored some movement in four children bedridden with a rare, life-threatening neurological disease. The first-in-humans achievement may also be helpful ...
Gene Therapy for Brain DiseaseScientist
Clinical Data Published for a Phase I AADC-deficiency Trial Using a Gene ...MarketWatch (press release)

all 12 news articles »
Categories: Rare Disease

Love for Lucas raises $30000 to battle rare disease - Chronicle-Telegram

Google Rare Disease Feed - Wed, 2012-05-16 10:33

Love for Lucas raises $30000 to battle rare disease
Chronicle-Telegram
AVON LAKE — When they made plans for the inaugural Love for Lucas event, Nicole and Brian Hardman considered $5000 a more-than-adequate sum to raise for research of the rare disease that took the life of their baby boy last year at only 5 weeks old.

Categories: Rare Disease

NORD Forum Speaker: Bills Hold Major Promise for Rare Disease Patients - Sacramento Bee

Google Rare Disease Feed - Wed, 2012-05-16 07:59

NORD Forum Speaker: Bills Hold Major Promise for Rare Disease Patients
Sacramento Bee
By National Organization for Rare Disorders (NORD) WASHINGTON, May 15, 2012 -- /PRNewswire-USNewswire/ -- The House and Senate versions of "PDUFA V" are on track for timely congressional approval and represent the most significant legislative advances ...

and more »
Categories: Rare Disease

Two Chicago Bear Greats to Help Tackle Rare Disease - Patch.com

Google Rare Disease Feed - Wed, 2012-05-16 07:33

Two Chicago Bear Greats to Help Tackle Rare Disease
Patch.com
Brian Urlacher and Lance Briggs will be signing autographs at Lake Barrington Field House to support the fight against Batten Disease. By Tim Priester Despite being afflicted with a rare and debilitating neurodegenerative disorder known as late ...

Categories: Rare Disease

Decision to end genetic council funding criticised - ABC Online

Google Rare Disease Feed - Wed, 2012-05-16 06:28

Decision to end genetic council funding criticised
ABC Online
The department is instead advertising for a group that focuses on all rare diseases, not just those with a genetic origin, to take over. The council's chairman Mitch Messer says its service should have been continued. "Our real concern is to see that ...

and more »
Categories: Rare Disease

Blood drive for woman with rare disease - Brisbane Times

Google Rare Disease Feed - Wed, 2012-05-16 04:58

Blood drive for woman with rare disease
Brisbane Times
Websites in the Fairfax Digital Network offer streaming video and audio in the Flash format. Streaming media allows you to watch video on a website as a continuous feed, as opposed to waiting for an entire audio or video file to download to your ...

and more »
Categories: Rare Disease

'Diamond' racers run for rare diseases - Vancouver Courier

Google Rare Disease Feed - Wed, 2012-05-16 04:54

'Diamond' racers run for rare diseases
Vancouver Courier
During one such moment, the Lux Jewels owner received a call from the Rare Disease Foundation she couldn't forget. "There's one in [12] people in Canada with a rare disease, so it's not that rare when you think about one in [12]- Fifty per cent of whom ...

and more »
Categories: Rare Disease

Flesh-eating germ rare, especially for the healthy - Philadelphia Inquirer

Google Rare Disease Feed - Tue, 2012-05-15 20:49

ABC News

Flesh-eating germ rare, especially for the healthy
Philadelphia Inquirer
Georgia grad student Aimee Copeland is fighting a life-threatening flesh-eating disease, and doctors are calling her case very rare. The infection occurred after she gashed her leg in a Georgia river May 1, 2012, after a zip line accident.
Necrotizing fasciitis: What is the flesh-eating disease?Fox News
Girl With Flesh-Eating Disease Faces 'Horror,' 'Depression'ABC News
Georgia grad student battling rare flesh-eating diseaseNECN
WHNS Greenville -Chicago Sun-Times
all 2,557 news articles »
Categories: Rare Disease

'Even docs misdiagnose rare disease MPS' - Deccan Herald

Google Rare Disease Feed - Tue, 2012-05-15 20:20

'Even docs misdiagnose rare disease MPS'
Deccan Herald
A workshop was conducted in Maulana Azad Medical College (MAMC) on Tuesday to spread awareness about life-threatening rare genetic disorder, MPS. Doctors, researchers, parents and children gathered to observe the international MPS Awareness Day.

and more »
Categories: Rare Disease

'Diamond' racers run for rare diseases - Vancouver Courier

Google Rare Disease Feed - Tue, 2012-05-15 17:05

'Diamond' racers run for rare diseases
Vancouver Courier
During one such moment, the Lux Jewels owner received a call from the Rare Disease Foundation she couldn't forget. “There's one in [12] people in Canada with a rare disease, so it's not that rare when you think about one in [12]…

Categories: Rare Disease
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