Scroll
To Top

June 12, 2020

TOPIC: Featured News, Patients & Members, Patient Stories

Rare Reflections: Jacob’s Story

Posted at June 6, 2020 08:48 am by Laura Mullen

I was diagnosed with toxic acute progressive leukoencephalopathy, a rare brain disease that took me from a high functioning and able-bodied individual to locked in syndrome, in six months. This story began on May 24, 2017 at UMass Memorial Hospital in Worcester Massachusetts. I went to the emergency department with stroke-like symptoms. Life was never the same.

Read More

March 20, 2020

TOPIC: Featured News, Patients & Members, Patient Stories, Head of the Herd

Head of the Herd: Michele Sloan, Foundation to Fight H-abc

Posted at March 3, 2020 07:59 am by Laura Mullen

Head of the Herd: Michele Sloan, Foundation to Fight H-abc

At the head of the herd is… Michele Sloan, Director, Foundation to Fight H-abc

Michele most frequently checks her… Facebook page

Michele advocates for those living with… Hypomyelination with atrophy of basal… Read More

March 6, 2020

TOPIC: Featured News, Patients & Members, Advocacy, Patient Stories, Head of the Herd

Head of the Herd: Akiva Zablocki, The Hyper IgM Foundation

Posted at March 3, 2020 07:59 am by Laura Mullen

At the head of the herd is… Akiva Zablocki, President, The Hyper IgM Foundation

Akiva most frequently checks his…  https://www.facebook.com/Akiva 

Akiva advocates for those living with… hyper IgM syndrome

Akiva is located in… New York, NY

How Akiva got here…

In 2013, my son was… Read More

February 29, 2020

TOPIC: Featured News, Advocacy, Patient Stories, Rare Disease Day

Savannah’s Story in honor of Rare Disease Day

Posted at February 2, 2020 03:00 pm by Valaree DonFrancesco

I suffer from neuromyelitis optica, or NMO disease (sister of MS, also known as Devic syndrome) and chronic pain. I experienced my first attack in the summer and now am in the thick of my second one (a relapse), and was officially diagnosed in October with NMO.

NMO… Read More

February 29, 2020

TOPIC: Featured News, Advocacy, Patient Stories, Rare Disease Day

Bridget’s Story in honor of Rare Disease Day

Posted at February 2, 2020 01:00 pm by Valaree DonFrancesco

I was diagnosed with afibrinogenemia when I was just one day old. The day I was born my heel sticks would not stop bleeding, which immediately had the delivering doctor puzzled. I was then rushed to a different hospital, four hours away, where there were specialists that could figure… Read More