Jersey Country Revival concert to raise funds for anemia foundation Sept. 5

August 26, 2009

Courtesy by: app.com

Michael Patrick’s 3rd Annual Jersey Country Revival will take place at Brewster’s Bar & Grill in Bradley Beach starting at noon on Saturday, September 5, 2009.

The concert showcases live 12 New Jersey Country music acts, features headliner John Eddie and benefits The Cooley’s Anemia Foundation, leading the fight against Thalassemia (http://www.thalassemia.org).

The Revival celebrates its 3rd year of showcasing Country music in New Jersey, while donating proceeds to The Cooley’s Anemia Foundation, whose mission is advancing the treatment and cure for the fatal blood disease Thalassemia, enhancing the quality of life of patients and educating the medical profession, trait carriers and the public about Cooley’s Anemia/Thalassemia major. An organization of personal importance to Patrick, as this is an illness that has affected his loved ones.

Michael Patrick is an established local performer, who recently shared the stage with such country superstars as Randy Travis, Rosanne Cash and Marty Stuart. Along with his success performing as a solo artist, Patrick currently fronts two bands, Michael Patrick and the Suburban Hillbillies (http://michael-patrick.net) and the Ring of Fire Band, a Johnny Cash Tribute (http://www.ringoffireband.com).

Patrick is also founder of the Suburban Roots Concert Series (http://www.myspace.com/srcsnj, http://www.facebook.com/suburbanroots.concertseries), a concert promotion group whose mission is to support and promote artists in the Americana, Roots, Folk and Country genres in Patrick’s home state of New Jersey.

We are very pleased and proud to announce the addition of singer/songwriter John Eddie (http://www.johneddie.com) as headline performer for the Country Revival. John Eddie is a legend on the Jersey Shore, not to mention his success across the country, including regular appearances in Las Vegas, Los Angeles, New England and the Midwest. A true-grit rocker, once touted as the next Bruce Springsteen, Eddie’s musical journey led him into Country and Folk territory in recent years. His songs are witty, rollicking, honest and sometimes downright heartbreaking. His live performances are electrifying, leaving the crowd on its feet and shouting for more.

The show and continues until closing at 1:00 a.m. Featured local performers include: Michael Patrick and the Suburban Hillbillies, Bob Polding Band (http://www.myspace.com/bobpolding), Ring of Fire Band, Victory Gin (http://www.victoryginband.com), Rob Dye Band (http://www.myspace.com/robdyeband), Old No. 7 (http://www.myspace.com/on7band), BBQ Bob and His Only Friends (http://www.bbq-bob.com), E-Boro Bandits (http://www.eborobandits.com), Rodeo Clowns (http://www.facebook.com/rodeoclowns.newjersey), Anthony Manno (http://www.myspace.com/anthonymanno) Chuck Schaeffer (http://www.myspace.com/chuckschaeffermusic) and Acoustic Thunder (http://acousticthunder.ferryboatrecords.com).

Sponsors of the event include: Colts Neck Custom Shop (Finest Guitars on the Jersey Shore), The Cooley’s Anemia Foundation, Brewster’s Bar & Grill, Suburban Roots Concert Series and others to be announced at a later date. In addition to the live music there will be raffles, contests, prizes and 50/50’s, with proceeds benefiting The Cooley’s Anemia Foundation.

Admission to the benefit is $10 from noon until 9 pm and $20 after 9pm. Guests can re-enter once they purchase their wristbands. All ages are welcome at this “family friendly” event at Brewster’s Bar & Grill, which is located adjacent to a bowling alley. Bring the whole family for an affordable day of fun and music.

For more information visit: http://www.michael-patrick.net/jcr.html


Mobilink arranges blood donation

August 22, 2009

Courtesy by: thenews.com.pk

KARACHI: Mobilink, a subsidiary of Orascom Telecom, organised blood donation drives at its offices nationwide for children suffering from Thalassemia and other blood diseases.

In total, more than 200 pints of blood were donated to Fatimid Foundation in Karachi and Lahore along with similar healthy blood donations to Sundas Foundation in Islamabad.

Organised under the auspices of Mobilink Foundation, employees were driven with the common goal of providing Thalassemics a chance to live with an improved quality of life. A pint of blood generally suffices three patients adding approximately two to six weeks in their lives. The contribution marks a commitment to societal and communal well-being.

Mobilink appreciated the work of Fatimid and Sundas Foundation for playing a very positive and supportive role in saving innocent lives and facilitating free of cost transfusion and treatment to needy children.


RSS, communist activists get together at Christ

August 22, 2009

Courtesy by: himvani.com

Shimla: It was the first-ever voluntary blood donation camp organized in a church in Shimla and a surprise for many as people belonging to RSS and even those with ideology also came forward to donate blood along with local Christians and Hindus to support the cause of Children with Thalassemia. The camp was proof that voluntary blood donation is capable of demolishing the artificial barriers of our society.

The camp was jointly organized by Young Men’s Christian Association (YMCA), Shimla, and Umang Foundation at the 150-year-old Christ Church on the historic Ridge on August 9. The first donors, on the same bed, were Naresh Kumar and Jay Singh Thakur, SFI and RSS activists respectively, both students of journalism at Himachal Pradesh University. As many as 60 persons donated blood in the camp including Umang Foundation president Ajai Srivastava (76th time), Pratap Singh Thakur (45th time), Bharti Kuthiala and Jaya Sharma (both 26th time). Rev. Shamsher Masih, Father Xavier Herald and YMCA Shimla general secretary Naresh Scott also donated blood in the camp.

A veteran voluntary blood donor VD Kuthiala, who has a record of 151 donations in his name, while inaugurating the camp said, “It is a very touching moment for me to see young blood donors like Naresh and Jay Singh belonging to opposite ideologies donating blood on the same bed in a church compound. This would straighten the voluntary blood donation movement in the state. I appreciate Ajai Srivastava’s untiring efforts to bring people close through blood donation.” He also congratulated Naresh Scott for his initiative to organize such camp in a church.

Some children with Thalassemia were also present in the camp with their parents to express thanks to the blood donors. It was the 7th camp by Umang Foundation in support of children with Thalassemia in the last 14 months and about 500 units of blood have been collected in these camps. Ajai Srivastava said, “On an average every two months we organize a blood donation camp with help from different social organizations and the blood collected in these camps goes to the biggest hospital of Himachal Pradesh i.e. Indira Gandhi Medical College, Shimla.”

Naresh Scott said the response for the camp was encouraging and now YMCA Shimla would organize such camps twice a year.


Transfusion-dependent Thalassemia Patients Doubled – Rosmah

August 22, 2009

Courtesy by: bernama.com

KUALA LUMPUR, Aug 9 (Bernama) — The number of registered transfusion-dependent thalassemia patients nationwide has nearly doubled in five years, to 4,385.

In 2004, there were 2,500 registered patients.

Therefore, the younger generation especially, who planned to get hitched or were seeking spouses, need to undergo blood screening test to determine whether they were thalassemia carriers, said the prime minister’s wife, Datin Seri Rosmah Mansor.

“Without any pro-active intervention, the number of new thalassemic cases will increase unabated, due to marriage between carriers.

“Currently, there are nearly a million thalassemia carriers in the country, which means about one out of 20 Malaysians is a carrier,” she said at the launch of Thalassemia Awareness Day 2009 here on Sunday.

Rosmah, who is also Thalassemia Association of Malaysia’s patron, said awareness campaigns such as this, would keep the interest and curiosity going, with the public constantly reminded of the disease and its transmission mode.

Thalassemia is an inherited form of anaemia or a blood disorder which is divided into Thalassemia Minor and Thalassemia Major.

Children of healthy Thalassemia Minor couples could suffer from Thalassemia Major.

Thalassemia Major is a very serious disease which, if untreated, can cause death to children aged between one and eight.


Team runs road race for twin girls in Bridgewater

August 22, 2009

Courtesy by: enterprisenews.com

BRIDGEWATER — To the naked eye, Alexia and Kailyn DeBoe appear to be normal, healthy 8-year old-girls who love SpongeBob, Hannah Montana, cheerleading, dancing and summer camp when, in fact, the girls have a rare blood disorder called thalassemia, which requires monthly blood transfusions to keep them alive.

The girls are the daughters of Anthony and Bridgette DeBoe of Bridgewater.

“They are getting to that age where their friends are asking them why they miss school once a month and why they go to the hospital,” said Anthony. “They tell them they get transfusions that, because of their illness, they need to have or they would die. They still don’t know the full details of what it is and why, but they know they need them.”

According to http://www.thalassemia.org, thalassemia is actually the name of a group of genetic blood disorders, the most common treatment for which is red blood cell transfusions which the twins undergo monthly. These transfusions are necessary to provide the girls with a temporary supply of healthy red blood cells with normal hemoglobin capable of carrying the oxygen that the girls’ bodies need.

There is no cure.

Today, a team of 12 runners of the Bridgewater-based “Running for the Twins” team will run the 7.1-mile Falmouth Road Race to raise money to help offset expenses not covered by health insurance.

The team is comprised of family and friends, and was created five years ago after a conversation on the commuter train between Anthony DeBoe and Keith Buohl, whose family founded the team.

“We started the team because we are friends with the DeBoes and, if something like this happened to our family, we would hope our friends would want to help us out as well,” said Buohl.

The team has raised $46,000 over the last four years from friends and family as well as charitable donations from Dale Higgins at the Bridgewater Festival of Lights, the Bridgewater Board of Selectmen, and corporate sponsors such as Parc Blvd Inc., which owns Bridgewater’s Dunkin Donuts.

“There’s nothing like the feeling of coming over that hill and seeing the faces of my family and the DeBoe family waiting for me at the finish line,” said Buohl.

The twins say it’s fun to be there when the runners finish the race.

“It’s fun when Keith stops and talks to us and then he runs and finishes the race,” agree Lexi and Kailyn.

“It is hard to put into words how much Keith and his family doing this for the girls means to us,” said Anthony. “To know you have people in your life willing to take time out of their busy schedules to help the girls is very special to us. Words can’t describe our appreciation for all that they do.”

To support Running for the Twins, donors can send a check payable to the “Alexia & Kailyn DeBoe Family Fund” to Keith Buohl at 10 Fieldcrest Drive, Bridgewater 02324. For more information or to schedule a donation pick-up, call 508-279-3259.


Cord blood bank to be set up in Ahmedabad

August 17, 2009

Courtesy by: indianexpress.com

A new collaboration between StemCyte Inc. of the US and Apollo Hospital Enterprises Ltd. now promises to bring about a revolution in the treatment about 70 diseases by introducing the ‘plasma depletion’ technology in India.

A Memorandum of Understanding between the two companies was signed at the Vibrant Gujarat Summit and the collaboration has resulted into StemCyte India Therapeutics Pvt. Ltd. This cord blood bank will be located in Ahmedabad and will have the patented technique of processing and storage of StemCyte Inc., announced the officials of the StemCyte on Thursday.

The technology of collecting high volume of stem cells called ‘plasma depletion’ which helps in successful therapeutic applications of umbilical cord stem cells can be used in the treatment of 70 different diseases like leukaemia, lymphoma, myeloma, thalassemia, sickle cell anaemia, fanconi anaemia and auto immune deficiency diseases. These diseases have been successfully treated with umbilical cord stem cells. The umbilical cord blood stem cells are fast emerging as a prime source of stem cells in the field of regenerative medicine, repair of injured tissues, nerves and organs.

According to Tushar Dalal, president of StemCyte India, the company plans to build 20,000 diverse units to help treat critically ill patients in India and abroad. He said, “Strategically situated in Gujarat, which has the highest frequency of Thalassemia patients, StemCyte India will spread the ray of hope among patients of this life threatening disease.”

While StemCyte has earlier signed two research and licensing agreements for human umbilical cord blood stem cell treatment of spinal cord injury, stroke, multiple sclerosis, Alzheimer’s disease, Parkinson’s disease, ALS, and other problems of the central nervous system, these research programs will be conducted in India by Apollo Hospitals and Cadila Pharmaceuticals here as well.


Blood Disease May Protect Kids Against Malaria

August 17, 2009

Courtesy by: oneindia.in

Washington, : In a new study, researchers have found that the blood disease alpha thalassemia may protect kids from malaria.

Alpha thalassemia is an inherited blood disorder in which children suffering from it unusually make small red blood cells that mostly cause a mild form of anaemia.

Now, researchers at the University of Oxford led by Karen Day, Ph.D., Professor and Chairman of the Department of Medical Parasitology at NYU School of Medicine, have found that having small red blood cells is an advantage against malaria.

“We made the surprising finding that packaging your hemoglobin in smaller amounts in more cells is an advantage against malaria,” she said.

“Alpha thalassemia is giving the child a hematological advantage by making more red blood cells.”

As a part of the study, researchers analysed around 800 children living in Papua, New Guinea, where malaria is endemic.

68 percent of children in Papua have alpha thalassemia. Dr. Day and her colleagues from the University of Oxford, Papua New Guinea Institute of Medical Research, and Swansea University, showed that kids with mild form of the disorder tolerated massive blood loss caused by severe malaria because they started out with 10 to 20 percent more red blood cells than unaffected children.

“It is really remarkable and so simple. Children with alpha thalassemia have adapted to the loss of red blood cells associated with malarial disease by making more of these cells with less hemoglobin,” says Dr. Day.

“So, these children do better because they end up with more hemoglobin overall when they have a malaria attack compared to normal children.

“We show that alpha thalassemia is giving the child a hematological advantage by making more red blood cells.

The study is published in the March issue of the journal PLoS Medicine. (ANI)


Metro blood bank project hits roadblock

August 17, 2009

Courtesy by: expressindia.com

Mumbai The proposed metro blood bank project at the civic-run Lokmanya Tilak Municipal General Hospital (LTMG) in Sion has not taken off yet as funds from the Centre have not reached the civic authorities.

The proposed state-of-the-art blood bank — the second such blood bank in the city after the state-owned metropolitan blood bank in the JJ Hospital complex in Byculla — was supposed to get a Rs 125-crore grant from the Centre.

Dr Sanjay Jadhav, member of the governing board, National Blood Transfusion Council, and in-charge of the metropolitan blood bank project, said the project is on and architects are being appointed, but he confirmed that the funds have not reached the civic authorities yet.

“The metro blood bank project in Mumbai is in sync with similar blood banks in Delhi, Kolkata and Chennai. The funds have to be released together,” he said. The funds for the blood bank were sanctioned in November 2008.

When contacted, Dr Sandhya Kamat, dean of LTMG Hospital, confirmed that the blood bank project has not taken off yet.

The civic body had identified a 75,000-sq ft plot at the old army barracks of Lokmanya Tilak Municipal General Hospital in Sion to set up the blood bank. It also had a plan to start the construction early this year.

A blood collection centre is only part of the mega project. The civic body has a plan to make it a centre of excellence by setting up a molecular biology lab, genetics studies centre,

immunology centre, cord banking and stem cell facilities, plasma fractionation centre, thalassemia day care centre, hemophilia day care centre and biotechnology laboratory.

The civic body is also planning to start Phd programme and post gradute courses like MD in transfusion medicine and MSc at the centre.

According to sources, the centre would act as a ‘mother’ blood bank for small and private blood banks in the city, with a fully automated facility for blood testing and component separation.

According to civic authorities, the project has not been written off and they are waiting for funds from the Centre.


A family health story: A dad’s fight to keep his son alive

August 17, 2009

Courtesy by: examiner.com

Meet Pat Girondi, trader, father of three, musician, the founder and CEO of Errant Gene Therapeutics and is on a mission to raise awareness for Orphan’s diseases. His first son, Rocco was given ten years to live back in 1992. He was diagnosed with a rare, genetic blood disorder called, Thalassemia. Thalassemia causes the body to make few red blood cells and less hemoglobin, causing anemia, fatigue and mild cases of Thalassemia can often be overlooked as iron-deficiency anemia. Severe cases such as Pat’s oldest son, needs regular blood transfusions to stay alive. Regular blood transfusions is needed for his son, every 18-22 days.

When Rocco was first diagnosed, he began doing intense experimental medicine. In the US under the regulations he could only continue in the hospital where the researcher was. It was cost prohibitive and impossible, Pat decided to take his family back to Italy where his son could receive proper treatment. He is glad he made the decision. “Italian doctors understand the blood disorder” Girondi says, “it is so rare in Chicago, that maybe 20 people in the entire Chicagoland area have it.” He truly believes they saved his son’s life.

Thalassemia tends to run in those with a Meditarrean heritage, including Italians, Greeks, Middle Easterns, Asians and African decents. He said it is found mostly with those who live on the “ocean.” About 15 percent are carriers. It is an easy and simple blood test that can find the blood disorder.

In 2007, Pat founded the Orphans Dream Foundation, a not for profit organization that supports research in Orphan Diseases. Orphan’s diseases are classified as a disease that receives little or no research funding because they are deemed unprofitable by large pharamceutical companies.

Pat g, Orphan’s HopeIn addition to his work as a trader and biopharmaceutical executive, Girondi is also an accomplished musician. Two of his tracks were recently featured in the Italian film Foccacia Blues and his third album with The Orphan’s Dream Band released Orphan’s Hope this summer. The band exists to raise awareness and funding for the Orphan’s Dream Foundation. All proceeds from album and ticket sales to the band’s events go directly to the organization.

Girondi currently splits his time between Bari, Italy and Chicago.

I had the opportunity to meet and talk with Pat, here are some questions that I asked him.

1) How was your son first diagnosed with Thalassemia? Patients become weak and lethargic because of their hemoglobin, the oxygen carrier in the blood is low. Blood tests showed he was sick.

2) Was it a quick diagnosis or did it take some time and research? We knew within a week from the initial blood test.

3) Were there any significant symptoms that lead you to believe he had this rare blood disorder? Lethargy and fatigue

4) Does anyone else in your family have Thalassemia? It is a genetic disease. Both his mother and I are carriers of the trait. It is mathematical. Each of our children had a 25 percent chance of being born sick.

5) How did you find the time to start the Orphan’s Dream Foundation in 2007? I have always tried to give back for my great luck in life. I am surrounded by people from around the world that have rare diseases. At any given time, I may be working on a half dozen cases. Given my experience in this field, I have a lot of services to offer to people in similiar situations to my own. I only do what I believe is correct. I always try to find the time to do what is correct.

6) Tell me more about the Errant Gene Therapeutics and the new FDA approved experimental treatment? We will soon be in patients…It is a gene therapy and has been in mice and primates. The principal participant researchers are at Sloan Kettering and the research team is made up of dozens of researchers from Singapore to California.

7) Has your son made any dietary and/or supplemental changes to help improve his condition? For example, certain foods can cause anemia. I just wondered if there has been any links to the foods he eats that can exaborate his condition. My son must take medication to get the iron out of his system. The iron comes from transfusions.

8) What can you advise to families who have children with rare health issues? What can they do to get the care and attention they need? People need to confront any major problems with resolve and patience. Every disease is different with different conditions and needs. They must be confronted one by one

We had a delightful conversation about Orphan Diseases, Thalassemia and everything else in between. He gets emails, phone calls and texts at all hours of the days from families looking for a cure, answers or for some help with their given conditions. He said, he pledged to God after his son’s diagnosis he would help other’s find ways to get answers to their condition. As with many parents who have children born of any type of disease, I asked him if his first born son stopped him from having more children. He said absolutely not. In fact, his second son was already born and tested right away. His results came up negative. He and his wife went on to have a third son, who also tested negative. He said children are gifts from God and are rewarding and a pleasure to have. You can tell when he speaks of his children, he really enjoys them. In his voice, they have a strong bond in supporting each other with love and respect. He says at the end of the day, it is about being effective and to help as many people as one possible can. I think Pat is doing exactly that.


Life Blood

August 17, 2009

Courtesy by: expressindia.com

For this man who has organised over 300 blood donation drives after losing his son to thalassemia, blood is not thicker than water

It was a response to a personal challenge that later turned into a charity drive. Ashok Khatuja, 58, got involved with blood donations after his experience, as a worried father, trying to find blood donors for his son, who was suffering from thalassemia. The traffic inspector with Western Railway suddenly realised how difficult it was for some Mumbaiites to find blood donors. “Ravi needed 12 bottles year early on. Later as he grew, he needed three bottles a month. He passed away in December 2004, at the age of 24 years. But those years helped me see the problems of other parents whose children are suffering from similar diseases,” Khatuja says.

In March 1987, he organised his first blood donation camp at Dadar railway station, for St George Hospital, specifically to help thalassemic children. “From that camp, we collected 300 bottles,” Khatuja remembers.

Having joined the railways in November 1971 as a train clerk, Khatuja earlier organised camps with organisations that work for the welfare of children suffering from thalassemia. But four years ago, he formed his own group called the Western Railway Social Service Group with the support of then general manager MZ Ansari.

“Our first camp was organised on April 7, 2005 and since then, we have organised more than 300 camps and collected 25,000 bottles of blood. Earlier, we would collect about 2,000 bottles every year but for the past three years, we’ve been collecting 5,000 bottles a year,” he says, adding that he enjoys tremendous support from senior officers, deputy chief operations manager SK Jha who is the group’s president.

The group’s work has led to several staffers of the railway becoming regular donors, including Chief commercial manager NC Sinha and senior medical officer Dr Uma Jindal.

“There are many blood donors who call me once every three months and ask where they can donate blood,” Khatuja says, all praise for his co-workers and seniors. In fact, from across the country, railway officials not only appreciate his work but even call when blood has to be arranged in emergencies.

“A chief operations manager in Secunderabad once called requesting for help in arranging 14 bottles of blood for his wife who was getting a liver transplant. Similarly, three years ago, a station master in Ratlam needed 20 bottles since he was to undergo a bypass surgery.”

Khatuja has a word of caution too, advising that people should donate blood with the assurance that it will be for the use of a patient somewhere, rather than for sale to blood banks.

“I always conduct my camps for government units, where they give blood free to all blood donors and charge non-donors only Rs 425 a bottle. Some private units sell blood at Rs 2,000 a bottle or more.”

With a couple of years to go for retirement, Khatuja hopes to continue serving people in the memory of his son. “Because I know others need me too.”


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