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Wednesday, February 19, 2014

Mayor Mary Brown Proclaims Feb. 28 Rare Disease Day

Mary Brown delivers her proclamation to Joey Holt and his mother, Gina Bridewell-Holt, of Fort Thomas. Photo source// Melissa Kelly


by PAT LaFLEUR
Reporter, Fort Thomas Matters

Joey Holt, a 12-year-old Fort Thomas resident, asked Mayor Mary Brown and members of City Council to proclaim Feb. 28, 2014 Rare Disease Day.


Rare Disease Day is an international initiative to "raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.” The National Organization of Rare Disorders (NORD) is organizing the event in the United States.

Joey has Langerhans cell histiocytosis (LCH), an immune disease affecting approximately 1 in 200,000 children, and even fewer adults, each year.

Gina Bridewell-Holt, Joey's mother, explains that "LCH is a cancer-like disease. (Joey) has been in and out of the hospital three or four times now in the last 19 months."

There is no known cause to LCH, and no known cure. According to Bridewell-Holt, Children's Hospital, as luck would have it, is one of the best facilities in the nation for treating the disease.

"My son has chosen to become an advocate for Histio because he can while so many others with it are too sick and can't," she said. "My son is amazing and brave."

While Joey's condition might be extremely rare, having a rare disease is actually much more common: about one in 10 Americans suffer from a rare disease, and the National Institutes of Health have recorded over 7,000 diseases considered "rare," with no approved method of treatment.

Joey's family and friends hear Mayor Brown read the proclamation.

In support of raising awareness of rare diseases, Mayor Brown's proclamation reads:

WHEREAS, there are nearly 7,000 diseases and conditions considered rare in the United States, according to the National Institutes of Health (NIH); and

WHEREAS, many rare diseases, such as Langerhans Cell Histiocytosis, or Histio, are serious and debilitating conditions that have significant impact on the lives of those affected; and

WHEREAS, while more than 450 drugs and biologics have been approved for the treatment of rare diseases according to the Food and Drug Administration (FDA), millions of Americans still have rare diseases for which there is no approved treatment; and

WHEREAS, individuals and families affected by rare diseases often experience problems such as diagnosis delay, difficulty finding a medical expert, and lack of access to treatments or ancillary services; and

WHEREAS, while the public is familiar with some rare diseases such as "Lou Gehrig's disease" and sympathetic to those affected, many patients and families affected by less widely known rare diseases such as Histio bear a large share of the burden of funding research and raising public awareness to support research treatments; and

WHEREAS, thousands of residents in Kentucky are among those affected by rare diseases since nearly one in 10 Americans have rare diseases; and

WHEREAS, the National Organization for Rare Disorders (NORD) is organizing a nationwide observance of Rare Disease Day on February 28, 2014; and

WHEREAS, thousands of patients and caregivers, medical professionals, researchers, companies developing orphan products to treat people with rare diseases, and others in the state of Kentucky will participate in that observance.

NOW, THEREFORE, I MARY H. BROWN, MAYOR OF THE CITY OF FORT THOMAS, CAMPBELL COUNTY, KENTUCKY, do hereby proclaim that February 28, 2014, be declared as:


"RARE DISEASE/HISTIOCYTOSIS DAY"

within the city of Fort Thomas in honor of Joseph S. Holt, a local "Histio Warrior", and hereby ask that local citizens will educate themselves and consider giving support to those affected by rare diseases.

Joey left Tuesday night's meeting with a signed and sealed copy of the resolution. Here is Bridewell-Holt's recent blog post describing Joey's work in more detail.

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