Latest News

Sunday, August 30, 2015

Gamers and Cure worked together to represent the rare disease community
abc27
They desire to raise awareness of this disease. “Each game is a victory. This event gives a face to a group that lives with such a difficult and misunderstood condition. It's gratifying that we can educate those who might not have ever known of the ...

and more »
Sunday, August 30, 2015

Opelika Auburn News

Parents of Opelika toddler with rare disease to host fundraiser Sept. 12
Opelika Auburn News
Two weeks before Porter Heatherly's third birthday, the Opelika toddler is dressed to match the students at the university nearby who are working with researchers on a cure for the rare disease that has weighed on his family since he was 4 months old.

Saturday, August 29, 2015

ABC Action News

Strangers Bond Through Social Media to Cope with Rare Disease
ABC Action News
They are both former police officers, wounded on the job, suffering from PTSD, and diagnosed with a rare nervous system disorder called transverse myelitis. Buck's wife encouraged him to reach out to Bignotti, and instantly, a friendship was formed.

Saturday, August 29, 2015

myCentralOregon.com

Parade of Big Trucks Honors Toddler Who Died From Rare Disease
myCentralOregon.com
ABC News station KNXV-TV in Phoenix reports that more than 100 trucks, including fire engines, vintage military vehicles, and semis, went through the city of Mesa Friday afternoon. It was all for Elijah Steffen, who died on August 21 from a rare disease.
RAW VIDEO: Hundreds join Mesa funeral procession for toddler who loved trucks10News
Hundreds of trucks line the streets for 3-year-old's funeral processionFOX 10 News Phoenix

all 13 news articles »
Saturday, August 29, 2015

KMBZ

Parade of Big Trucks Honors Toddler Who Died From Rare Disease
KMBZ
ABC News station KNXV-TV in Phoenix reports that more than 100 trucks, including fire engines, vintage military vehicles, and semis, went through the city of Mesa Friday afternoon. It was all for Elijah Steffen, who died on August 21 from a rare disease.
RAW VIDEO: Hundreds join Mesa funeral procession for toddler who loved trucksWXYZ

all 13 news articles »
Saturday, August 29, 2015

Gamers play through 30 games to represent rare disease community
The Sentinel
Over the weekend, Northern and 25 other Red Hat members partook in a 30-hour video game marathon to raise awareness about hereditary hemorrhagic telangiectasia (HHT), a rare genetic disease that causes malformed blood vessels and can lead to ...

Saturday, August 29, 2015

Herald Sun

No room for teen with rare disease
Herald Sun
EMMALLE McCabe has a disease so rare it does not yet have a name. At 15 she dresses in the clothes of an eight year old – yet has the bone density of an 80-year-old. Emmalle suffers a wasting disease not unlike cystic fibrosis. Only 35 other people in ...

and more »
Saturday, August 29, 2015

NEWS.com.au

No room for teen with rare disease
NEWS.com.au
Emmalle suffers a wasting disease not unlike cystic fibrosis. Only 35 other people in the world are known to have it. It means she is unable to properly digest her food. Emmalle, from Deception Bay north of Brisbane, is kept alive by a formula of ...

and more »
Saturday, August 29, 2015

Get Surrey

Guildford teen's 'painful' charity abseil will raise awareness of rare disease
Get Surrey
Four years ago, Sonali Lakhani was told she may never walk again after her muscles had weakened due to a rare incurable genetic disease – but this weekend she will abseil down the country's tallest sculpture. After being described as a 'medical mystery ...

Saturday, August 29, 2015

Woman Blinded & Paralysed By Rare Disease Having Charity Party
Mix 96
So tonight she's having a charity party for the charity set up just this year to look into the rare condition. It's happening at Thame Football Club from 7.00pm and Annabelle said 'more the merrier'. There's a band, a hogroast, raffle and a silent ...