General

Introduction

Hello, I have a daughter who is 11 years old now who was diagnosed with idiopathic infantile spasms at 4 1/2 months old. We have been through a lot over the years and would be glad to answer any and all questions that parents with newly diagnosed or younger children may have.

Rare Disease of Interest: 
Infantile Spasms

Irish Family Seeks Help From America for Their Dying Children

After both their children were diagnosed with a fatal disease, a husband and wife living in County Kerry, have begun fundraising to bring their babies to the United States for clinical trials that just may save their lives.

"If we don't do this our children will die," Tony Heffernan told the Irish Voice from his home in Keel, Co. Kerry on Monday.

Heffernan, 38, is the proud father of 4-year-old Saoirse and 22-month-old Liam.

Rare Disease of Interest: 
X Linked Retinoschisis

ALS takes victims ‘by the centimeter’

By BETTY RIDGE

Tahlequah resident Marge Malone recalls the battle her husband, Jim, fought with the disease before it claimed his life.

Like the villain in one of the dramas he so loved, ALS stole onto the stage, shortening and finally claiming the life of Dr. Jim Malone.

Malone, a retired associate professor at Northeastern State University, died last Dec. 11 at age 65, only four months after his diagnosis with ALS. His decline and loss of abilities came more rapidly than for most ALS patients, who usually live for three to five years after their disease is diagnosed.

Rare Disease of Interest: 
Amyotrophic Lateral Sclerosis

Lawrenceville resident and former coach featured in National awareness campaign

The Muscular Dystrophy Association has selected former high school football coach James “Tony” Blanton of Lawrenceville, Ga., to be profiled in its national campaign promoting awareness of ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease.) ALS is a devastating neuromuscular disorder affecting tens of thousands of Americans.

May marks the 19th annual National ALS Awareness Month, which Congress approved in 1992.

Rare Disease of Interest: 
Myotonic Muscular Dystrophy

Fighting cystic fibrosis one cup at a time: Girls use lemonade stand to raise money for cause

Ten-year-old Alyssa Jacobsen was working on a school project that involved more lemonade than her family could ever drink.

While standing in her kitchen, she read the story of another 10-year-old girl, Macey Horbach, a Naperville resident who is fighting cystic fibrosis and attempting to raise money to find a cure so that no other children will fall ill with the disease.

"Alyssa said, 'Wouldn't it be great if we took all this lemonade and sold it at a lemonade stand and gave all the proceeds to cystic fibrosis (research)?'" said Alyssa's mom, Kim Jacobsen.

Rare Disease of Interest: 
Cystic Fibrosis

Brooklyn dad keeps up fight for kid who suffers from pediatric multiple sclerosis

By Denis Hamill

Just as this Brooklyn father was organizing an oldies show fund-raiser, featuring Larry Chance and The Earls, to pay for continued research into his daughter's illness, the kid had a relapse.

Bang!

A ferocious shot to the heart that makes you hit the canvas. But this father keeps fighting for his kid.

This is how it goes for Jimmy Russo and his 7-year-old daughter, Julia Rose Russo, who suffers from a pediatric multiple sclerosis.

Rare Disease of Interest: 
Multiple Sclerosis

About Stuart - President and Founder of MS Views and News

MS Patient, Writer, Blog writer, Editor of Stu’s Views and MS Related News and Founder of the ‘MS Views and News’ organization
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My name is Stuart Schlossman and I Have MS. Relapse Remitting to be more specific.
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I live just outside of Fort Lauderdale, Florida. I have been married since 1988 to Patrice, and have two grown daughters and three grandchildren. When I am not resting I have three dogs that keep me busy and I volunteer as a co-facilitator for the National MS Society, as well as for MS Views and News.
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Rare Disease of Interest: 
Multiple Sclerosis

Syracuse preschooler lives with Pompe disease, showcased in Harrison Ford movie, "Extraordinary Measures"

By Amber Smith
The Post-Standard

Syracuse has a family affected by Pompe disease — just like the family in the Harrison Ford movie, “Extraordinary Measures” — but the diagnosis is where the similarities end.

“I kind of thought it was no comparison to my life, really,” says Nylecia Chatman.
Amber Smith/The Post-Standard
Davon Hunter, 3 1/2, of Syracuse receives Myozyme treatments every other week at Upstate Medical University.

Rare Disease of Interest: 
Pompe Disease

'Our beautiful girl' Eva Markvoort loses fight with cystic fibrosis

Eva Markvoort, the 25-year-old University of Victoria student whose blog about her battle with cystic fibrosis attracted an international following, died yesterday of the disease.

Markvoort has recently been awarded her theatre degree from UVic at her hospital bedside.

She had struggled with the genetic disease since she was a year old and went into chronic rejection after receiving a double lung transplant in 2007.

Her father, Bill Markvoort, said her family was by her side in her last days and "in the end she simply ran out of breath."

"We're going to miss her so much."

Rare Disease of Interest: 
Cystic Fibrosis

Community Gathers To Help Boy With Rare Disease

By Jackie Shutack

ALLENTOWN, Pa. -- Hundreds turned out Sunday to help an Emmaus family find a cure for their young son's disease.
3-year-old Joshua Scoble poses for pictures at a fundraiser held in his honor at the Allentown Fairgrounds.

JUSTIN O'NEILL/JOSHUA'S COUSIN: "He really wants to be a kid. Thank God he doesn't know what he has right now."
What he has is a rare genetic disorder that he shares with approximately 700 people worldwide.

STACY SCOBLE/JOSHUA'S MOTHER: "He has a condition called Fibrodysplasia Ossificans Progressiva, short for FOP."

Rare Disease of Interest: 
All Diseases

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