AHS and Hemochromatosis In The News

Newspapers

May 13, 2010 Memorial Tributes for Josephine Bogie Thomas appeared in:

Mt. Sterling Advocate, Mt. Sterling, Kentucky

Palm Beach Post & Palm Beach Daily News, West Palm Beach & Palm Beach, Florida

Orlando Sentinel, Orlando, Florida

Pittsburgh Post Gazette & Pittsburgh Tribune Review, Pittsburgh, Pennsylvania

May 13, 2009

 

Post-gazette NOW

http://classified.post-gazette.com/details.asp?id=15614807

In Loving Memory


JOSEPHINE BOGIE THOMAS
Mrs. Joseph Burghard Thomas

April 25, 1921/Mt Sterling, Ky to May 13, 1999/Pittsburgh, PA
It has been 10 long years since hereditary hemochromatosis
(HH)/iron overload disease stole you from us. Your legacy lives on through

the American Hemochromatosis Society (www.americanhs.org).

You will always be our "Iron Angel".

Remembering and loving you today, and every day, Mom.


Your daughter, Sandra Thomas

Published on 5/13/2009

April 25, 2008: US Senate passes bill banning employers, insurers from discrimination based on DNA tests

By JIM ABRAMS, AP Posted: 2008-04-24 WASHINGTON (AP) - People learning through genetic testing that they might be susceptible to devastating diseases would not also have to worry about losing their jobs or their health insurance under anti-discrimination legislation the U.S. Senate passed Thursday.

The 95-0 Senate vote sends the Genetic Information Nondiscrimination Act back to the House of Representatives, which could approve it early next week. President George W. Bush supports the legislation.

The bill, described by Sen. Edward Kennedy as "the first major new civil rights bill of the new century," would bar health insurance companies from using genetic information to set premiums or determine enrollment eligibility. Similarly, employers could not use genetic information in hiring, firing or promotion decisions.

"For the first time we act to prevent discrimination before it has taken firm hold and that's why this legislation is unique and groundbreaking," said Sen. Olympia Snowe, a Republican who sponsored the Senate bill.

There are more than 1,100 genetic tests available today, she said, but these are "absolutely useless" if fear of discrimination discourages people from taking tests or participating in clinical trials.

Genetic testing could lead to early, lifesaving therapy for a wide range of diseases with hereditary links such as breast and prostate cancer, diabetes, heart disease and Parkinson's disease.

"But right now the ability to realize those goals is somewhat limited" because of patients' fears that the information will be used against them, said Dr. David Herrington, a professor of cardiology at Wake Forest University and spokesman on genetic issues for the American Heart Association. The legislation "will help them both be more willing to participate in research and avail themselves of the benefits of genetic testing."

Congressional efforts to set federal standards to protect people from genetic discrimination go back more than a decade, to a time when there were only a small number of genetic tests. But now, with the mapping of the human genome in 2003, people have access to far more information about their hereditary disposition to such crippling afflictions as cystic fibrosis and Huntington's disease.

Bill sponsors said that has increased the likelihood that a prospective health insurance company or employer will reject a person because of concerns that person will suffer a costly disease in the future.

The Senate passed genetic nondiscrimination bills on unanimous votes in 2003 and 2005 but could not get the House to act. A year ago the House approved a White House-backed bill on a 420-3 vote.

Senate action on that legislation has been slowed by Sen. Tom Coburn, a Republican who joined some business groups in warning that the bill could encourage a flood of lawsuits.

A compromise worked out earlier this week tightens language to ensure there is a "firewall" between the part dealing with health plans and the section regarding employment, so as to discourage inappropriate claims.

It also makes clear that, while individuals are protected from discrimination based on genetic predisposition, insurance companies still have the right to base coverage and pricing on the actual presence of a disease.

On the Net:
Congress: http://thomas.loc.gov/

January 8th, 2007 issue of US News & World Report Magazine available now --AHS president, Sandra Thomas and the American Hemochromatosis Society are mentioned in this article by Nancy Shute on genetic testing and its future.

Unraveling Your DNA's Secrets

"...Ever since a gene that causes the disease was detected in 1996, doctors have debated widespread screening. Sandra Thomas, president of the American Hemochromatosis Society, encourages people who contact her to use DTC tests and thinks that everyone should be screened for the disease, which killed her mother."

Do-it-yourself genetic tests promise to reveal your risk of coming down with a disease. But do they really deliver?

January 2005--Dr. Crosby was a pioneer in hemochromatosis research.

Obituary - Dr. William H. Crosby Jr.

Dr. William H. Crosby Jr., a retired U.S. Army colonel and a world-renowned hematologist, died Saturday, Jan. 15, 2005, in Joplin, Mo.

Born in 1914 in Wheeling, W.Va., he was the son of W. Holmes and Frances Crosby, an architect and a schoolteacher.

Dr. Crosby was raised in Oil City and graduated from Oil City High School. He received both his A.B. and his M.D. from the University of Pennsylvania (1940) on a full scholarship during the Depression years.

Anticipating the United States entry into World War II, Dr. Crosby served his internship in 1941 at Walter Reed Hospital in Washington.

Following Pearl Harbor and leading to his overseas deployment, Dr. Crosby served in a number of administrative and training positions at Army posts around the country, including the Army's Medical Field Service School at Fort Sam Houston in San Antonio. Dr. Crosby was then assigned as regimental surgeon of the 338th Infantry Regiment.

As a field surgeon, he soon became acquainted with the horrors of triage, when wounded GIs overwhelmed the Army doctors with their sheer numbers and often-hopeless conditions. His service in Algeria and Italy (1943-1945) included episodes in which he distinguished himself at great personal risk. He was decorated with a Bronze Star Medal with two Oak Leaf Clusters, the first of many career awards.

Following the completion of his specialization training in Boston in the late 1940s with Dr. William Damashek, the dean of American hematology, Dr. Crosby was "seconded" to the Royal Army Medical Corps and spent a year at The Queen Alexandria Military Hospital in London. On returning to Walter Reed, his assignment was to establish hematology, the medical study of the blood, as a specialty in the U.S. Army. Five years later he established a second Army specialty: oncology, the treatment of cancer.

Dr. Crosby was chief of hematology at Walter Reed Army Institute of Research from 1951-1965.

In the winter of 1952-53, he was sent to Korea to become director of the Surgical Research Team in the combat zone. Following Korea, he returned to Walter Reed and established a "Sprue Team" in Puerto Rico to study that tropical disease of the small bowel. Dr. Crosby developed the "Crosby Capsule," a biopsy pod which permitted small intestine tissue analysis without intrusive surgery, as well as describing blood diseases like PK Deficiency, known for some time as "Crosby Syndrome." He also began to study the disease hemochromatosis, where the body overloads itself with iron to cause diabetes, cirrhosis of the liver, sterility, arthritis, heart failure and other disabilities. He maintained a lifelong interest in this disease.

In 1965, after more than 25 years of service, he retired from the Army to succeed his mentor at Tufts-New England Medical Center in Boston. Seven years later he moved on to Scripps Clinic and Research Foundation in San Diego, Calif., where he established a training program in hematology-oncology.

In 1979, he was recalled to active duty by the Secretary of the Army. He served another four years at Walter Reed and retired again after 30 years with the Army.

In 1983, Dr. Crosby was invited by the Veterans Administration to become one of 11 professors in its nationwide Distinguished Physicians Program stationed in V.A. Medical Centers throughout the country. He resigned from that post two years later to take up private practice in Joplin, where he would spend his remaining years.

Dr. Crosby authored more than 500 research papers and served on the editorial boards of 12 medical journals. He is a laureate of the American College of Physicians. He also served on many committees over the years and was a member of numerous medical organizations.

He is survived by his wife, Ann; a brother, Forrester "Foss" Crosby, of San Diego, Calif.; a sister, Marian "Krispy" (Crosby) Wolke of Waynesboro, Va.; four sons and their spouses, John and Karen Crosby, of Chesapeake, Va., Dr. Seth and Tally Crosby and children, Abram, Racheal, Samuel, Haley and Shayna, of St. Louis, Mo., David and Daniela Crosby and children, Nadine and Aaron, of Milan, Italy, and Jonathan and Susan (Belau) Crosby and son, Simon Holmes, of San Francisco, Calif.; two daughters and their husbands, Mary Ann (Crosby) and Doug Blankenship and children, Erik and Adam, of Damascus, Md., and Susanna and Jon Perrin and children, Samantha, Jonas and Alexandra, of Tigard, Ore.; a granddaughter, Olivia Crosby, of Rockville, Md.; two stepsons and their spouses, Jeffrey and Lynette Ball and children, Logan, Landon, Lane and Jordyn, of Columbia, Mo., and Wes and Lynn Ball and daughter, Eli, of Neosho, Mo.; three stepdaughters and their spouses, Lou Ann and Hal Brown and children, Christopher, Jessica and Adam, of Stark City, Mo., Beth and Mike Brock and children, Aaron and Kyle, of Bella Vista, Ark., and Cathy and Ron Brown and children, Sara, April and Riley, of Stark City.

He was preceded in death by a sister, Margaret Ann "Marney"(Crosby) Wood, of Pasadena, Calif., and a son, Holmes Crosby, of Rockville, Md.

Funeral ceremonies were held Jan. 17 at the United Hebrew Congregation in Joplin and the Mount Hope Cemetery in Webb City, Mo. Full military honors were rendered by the Fort Leonard Wood Honor Guard.

June 1, 2004

Sandra Thomas, President, American Hemochromatosis Society

Championing the Cause (GEORGE SKENE/ORLANDO SENTINEL)

Home-test kit aids early detection of disease
Sandra Thomas knows that, when it comes to your health, knowledge is power. Had her mother known early about the blood disorder she inherited, it would have saved her life.

© Orlando Sentinel, June 1, 2004

November 17, 2000
Iron overload easily cured, often ignored

By Diana Louise Carter
Democrat and Chronicle

March 10, 2000
Irish descendants at higher risk for disease

By John Hejkal
Daily Nebraskan

March 15, 2000
Irish in the Blood

by Colleen Dougher
CityLink

 

"The Great Ride"

Silhouette of Person Riding a Bicycle clipart

They did it!!

First post. Welcome to the page. Starting May 21st, Brendan Kay and myself, Ben Shuker, will begin our ridiculous cycle to Dublin. Reality has indeed set in. What better way to start off this blog than with a (very basic) map of our journey. When you see it on the world map… it really highlights how our stupidity and/or determination clearly know/s no bounds. 13,00km. 8,00miles. 5 days ‘til go time. -Ben

Ben Shuker, left, and Brendan Kay in Shanghai, China

Two men Bike from Shanghai to Dublin

for Hemochromatosis Awareness starting on

Monday, May 21, 2012 and ending on

Friday, December 7, 2012!

"We have officially made it from Shanghai to Dublin!"

11:30am GMT

14220km / 8836miles

75 flat tyres

40 broken spokes

123 ride days

6 1/2 months

20 countries

4 seasons

2 idiots

0 regrets

Thank you to everyone for your prayers and support. We are yet to meet any other touring cyclist who hasn’t had an accident. We don’t chalk up our good fortune to skill or luck- we are aware we are lacking in both. So thank you for your prayers. This will not be our last post but please, if you have been inspired or you want to show your support, donate now to The American Hemochromatosis Society or Haemochromatosis Australia. The work they do is more inspiring than anything we have accomplished.

****************************

Brendan Kay, 29, of Palos Park, Illinois started a bike ride on Monday, May 21, 2012 from Shanghai, China to Dublin, Ireland to increase public awareness and raise funds for a special cause: hereditary hemochromatosis (HH), which his uncle has. Brendan, was accompanied by Ben Shuker, 25, a friend and fellow adventurer from Australia. You can read about their trip on their very interesting, and often times, very humorous, blog at: http://shanghai-dublin.tumblr.com/

To make a donation to "The Great Ride!!" please click here:

Our finish line crew! This is the gang who met us at the finish line. Left to right. Clare Cooper, Margaret Mullet (President of The Irish Haemochromatosis Society), my buddy Matt, the Lord Mayor of Dublin smack in the middle, John Cooper and BK’s parents. This is us just before stepping inside for tea. What a blast!

On Friday, December 7th, 2012, Ben and Brendan write:

Our finish line crew!

This is the gang who met us at the finish line. Left to right. Clare Cooper, Margaret Mullet (President of The Irish Haemochromatosis Society), my buddy Matt, the Lord Mayor of Dublin smack in the middle, John Cooper and BK’s parents. This is us just before stepping inside for tea. What a blast!

Congratulations from the American Hemochromatosis Society!!