|
Aplastic Anemia News - Return to News Menu
Rare Bone Disease Fundraiser - son suffers from aplastic anemia
A car shop became a local gathering spot in Rensselaer County on Sunday
By Dan Bazile/WNYT Staff
NORTH GREENBUSH, June 12, 2005 -
A group of friends held a fundraiser to help a local man with a rare blood disease increase his chances of survival.
Randall Automotive on Washington Avenue in North Greenbush, is usually closed on Sundays, but the parking lot was filled with cars not going in for service, but to be washed. It is all an effort to raise money for Carol Adams' 27 year-old son Daniel.
"I'm overwhelmed. Can't believe it. There are so many wonderful people that have just been so supportive. It’s like one of the few pages in our book recently that have been positive" said Carol Adams. The negative pages revealed that Carol's son suffers from aplastic anemia, a rare blood disease that could be fatal.
Daniel had just graduated from law school, passed the bar exam and landed his first job in Boston.
Carol says Daniel is undergoing chemotherapy at Dana Farber cancer institute in Boston, but he will most likely need a bone marrow transplant.
His siblings have been tested and none are a donor match.
That is where the community comes in and the car wash is only the beginning.
A friend of the Adams family, Randy Schauble, said "We've had a great turn out and it's a nice day for it. Mr. and Mrs. Adams are here and we feel good about doing this for them."
They are also organizing a bone marrow registry drive in hopes of increasing Daniel's chances of finding a match. Carol says everyone should donate.
"It's just a good to do because it literally saves lives"
Community rallies for Adams
By: KRISTIN SHAW
E.GREENBUSH - 06/15/2005 - A man who for decades has given his time and energy to helping disabled youth here and throughout the Capital District, is now being supported in his own time of need.
Burke Adams' son, Dan Adams, has been diagnosed with aplastic anemia and needs a bone marrow transplant. The 27-year-old was diagnosed with the rare blood disorder two months ago. None of his family members is a match.
Sue Ellen Murphy, the mother of a four-year-old with muscular dystrophy who was "given hope" by Mr. Adams, has organized, with the help of other parents and teachers from Bell Top Elementary School, a Bowl-a-Thon for Dan to raise money for bone marrow screenings.
"Burke, Dan and Dan's mother Carol who taught 20 years in the East Greenbush School District have generously given their best to our community for many years and now it is our turn to give back by helping to save Dan's life," said Mrs. Murphy. "They have been my inspiration and are definitely role models for others. I don't think they realize just how many people they've touched by just doing what comes naturally to them and we all want to do something to help in their time of need."
The Bowl-a-Thon is set for June 26 from noon to 4 p.m. and will be held in two sessions, from noon to 2 p.m. and from 2 to 4 p.m. at Bowling Green Lanes, 570 Columbia Turnpike. "The bone marrow screenings cost about $65 per person," explained Mrs. Murphy. "We need about 320 bowlers to raise $10,000 to screen about 150 people. Dan's best shot at beating this disease is finding a match for the transplant, but the doctors have to find the right match. We're hoping if the screenings are free, people will come."
The bone marrow screening will take place Monday, July 11 at St. Mary's Church, 163 Columbia Turnpike, from 2 to 8 p.m. People between the ages of 18 and 60 are eligible to be donors.
"It is a simple test and it would be wonderful is someone screened was a match," said Mrs. Murphy. She noted that the name of every person screened will go onto the national registry: "If we don't find a match for Dan, maybe we'll find a match for someone else who needs it."
Mrs. Murphy asks that people form teams of five and bowl during one of the two sessions. The cost of $15 per person includes two hours of bowling, shoe rental, food and beverages. Interested persons are asked to register by Saturday, June 18 to reserve a lane and come 30 minutes before their bowling session in order to register and get ready.
"We're asking everyone and anyone who participates to get families, friends, neighbors, co-workers and businesses to get sponsors for this great cause," said Mrs. Murphy. "If each team member raises $40 each, it would cover about three screenings and would be a great help towards reaching our goal of $10,000, but we hope people will aim higher if they are able."
Mrs. Murphy is also asking residents to tell anybody and everybody they know to go and be screened at St. Mary's as a possible bone marrow donor for Dan.
"It's an amazing feeling having everyone pulling together for us," said Burke Adams. "So many people are reaching out, ready to help in any way they can. It's nice to have so many people in our corner."
Mr. Adams said his son first went to the hospital with pneumonia and following a routine blood test, was told his red blood cell count was dangerously low. "About 700 people a year are diagnosed with aplastic anemia," he said. "It's just bad luck." Dan is currently being treated by medication as he awaits a donor.
Mr. Adams said had a family member been a match, Dan would have a 90% change of living. A non-family member donor lowers the odds to a 70% survival rate.
Mr. Adams has been a volunteer in one form or another for the past 50 years, beginning at the age of 11 by forming a Whiffleball League in Albany.
"It's part of my life, to reach out and help," he said. "We [he and his wife, Carol] just keep on doing what we love to do. We never needed help before, but now that we do, we're realizing how many wonderful people there are here in Rensselaer County."
Mr. Adams said his son has always gone the extra mile to help someone out, especially his disabled sister, Jamie, whom he took to his senior prom.
"Jamie was 11 or 12," recalled Mr. Burke. "When we asked Dan whom he was going to take, he said Jamie, because he wanted to make sure she got to go to a prom."
Jamie was recently crowned queen of her prom at the Center forthe Disabled. She is also a six-time winner of the Special Needs Race that takes place before the annual Friehofer's Race in Albany.
Mr. Adams is founder and president of the Challenger League in East Greenbush for children with special needs, founded the Hudson-Mohawk Road Runners Club and Bankathon Race, volunteers at the YMCA and a local nursing home, has participated in all 27 of the Empire State Games, and organizes sports events for disabled children. He currently has 42 children on a baseball team, 52 on a basketball team and 23 on a football team.
Last year, Mr. Burke received the Jefferson Award for distinguished contributions through public and community service.
He and the town's planning director, Jim Moore, recently formed the East Greenbush Mircale League and are looking to establish a ballfield for mentally and physically challenged children.
The Town Board has committed to providing land for the field at the newly expanded Town Park on Elliot Road. Now $225,000 is needed to build the facility which would be the first in the state and 15th in the country.
Dan, a Columbia High School graduate, is also a graduate of the University of North Carolina and Harvard Law School, where he completed his studies in four years instead of the usual five, according to his father. Dan lives in Boston and is an attorney.
If someone can't make the Bowl-a-Thon but wishes to make a donation, they can do so by sending a check payable to the Dan Adams Fund to the Bell Top School, 39 Reynolds Road, Troy 12180.
For information, call Mrs. Murphy, 283-9273.
Alexion Says Soliris Receives EC Approval To Treat PNH Patients; Expects Introduction To European Markets By 2007 End
6/22/2007 7:45:30 AM Friday, biotechnology company Alexion Pharmaceuticals Inc. (ALXN) said its Soliris received European Commission's approval for the treatment of patients with paroxysmal nocturnal hemoglobinuria or PNH. Alexion expects to launch Soliris in one or more major European markets by the end of 2007, with additional countries to follow in 2008.
PNH is a rare, disabling, acquired genetic blood disorder defined by chronic red blood cell destruction, or hemolysis. This is a condition in which patients' red blood cells are destroyed by complement, a component of the body's immune system. In PNH patients, hemolysis will show symptoms like severe anemia, disabling fatigue, recurrent pain and shortness of breath. Other notable symptoms related with this disease are pulmonary hypertension, intermittent episodes of dark colored urine and kidney disease, other than impaired quality of life and blood clots. PNH is estimated to affect about 8,000 to 10,000 people in North America and Europe, in the age group of early 30's. PNH is commonly recognized among patients with disorders of the bone marrow, including aplastic anemia and myelodysplastic syndrome.
The European Medicines Evaluation Agency, or EMEA, approved Soliris is a designated orphan medicinal product that reduces hemolysis in patients with PNH. As per the company, European Commission or EC has approved labeling for Soliris, as “Soliris is indicated for the treatment of patients with PNH.” The label further states, “Evidence of clinical benefit of Soliris in the treatment of patients with PNH is limited to patients with history of transfusions.” The product label for Soliris in Europe also includes a special warning, “Due to its mechanism of action, Soliris increases the patient's susceptibility to meningococcal infections (Neisseria meningitidis),” Alexion added.
Commenting on the approval, Leonard Bell, Chief Executive Officer of Alexion, said, “As the only therapy approved in both Europe and the United States to treat PNH, EC approval marks another major milestone for Soliris and brings hope to patients living with this debilitating disease.”
Early June, Alexion announced positive results from three Phase III studies conducted on Soliris or eculizumab. The trail results with Soliris showed significant reduction in hemolysis in all PNH patients, which led to an improvement in anemia, patient functioning and quality of life and fewer thrombotic events. The trail results also demonstrated the impact of Soliris on multiple subgroups of PNH patients and showed that the effect of Soliris was maintained across all subpopulations.
Soliris got U.S. FDA approval in March for treating patients with PNH.
ALXN closed Thursday's regular trading session at $46.33, down $0.37, on a volume of 452K shares.
|
