UAE Genetic Diseases Association carries on initiative for UAE free from thalassemia by 2012

July 30, 2010


UAE Genetic Diseases Association (UAEGDA), the sole non-profit genetic organization in the UAE, recently announced that they are on track to achieve their “UAE Free from Thalassemia 2012” initiative, saying that the target looks quite achievable to eliminate births of children born with the genetic blood disease within the next two years.

Offering free and confidential testing and in association with National Bonds Corporation PJSC, the organisation held a blood screening drive earlier this week for its employees to screen them for the most commonly inherited blood genetic disorders—including as Beta Thalassemia, sickle cell anaemia, G6PD deficiency and Diabetes Mellitus—in support of UAEGDA’s national health campaign.

Regularly organized screening drives help to increase an individual’s awareness on the health risks posed by genetic blood disorders, which can be passed from one generation to the other. The process begins by registering online at the UAEGDA website. Bar-coded labels are then printed and placed on the individuals testing tubes after which the sample of blood is processed in the UAEGDA laboratory. The results are then sent directly to the individual’s email with all the details being handled solely between the client and the organization.

Dr. Maryam Matar, Founder & Chairman of UAEGDA, says that genetic blood diseases like thalassemia are highly prevalent in the UAE but can be addressed with a simple and inexpensive blood test as a primary solution in helping to reduce the presence of hereditary diseases in the country.

“We are confident that with the rapid increase in the activities of our organization and with all the awareness events organized by UAEGDA across the country, we can make the UAE free of thalassemia by 2012,” adds Dr. Matar.

As one of UAEGDA’s leading partners, National Bonds Corporation PJSC takes responsibility towards its employees seriously and is working in association with UAEGDA to support the government’s campaign to eradicate thalassemia in the country by 2012.

“We are committed to stepping up the fight against thalassemia and working towards the health of the nation, both in terms of physical and financial wellbeing,” comments Mr. Mohammed Qasim Al Ali, CEO of National Bonds Corporation PJSC.

“By offering our employees UAEGDA’s free and confidential voluntary tests, we can ensure their own wellbeing as well as that of future generations.”

The UAE Genetic Diseases Association has been able to considerably reduce the impact of common genetic disorders prevalent in the country through its community outreach programs, health education, counseling and free screening tests. They also have a free genetic clinic equipped with a state-of-the-art screening facility supervised by internationally renowned experts.

HemaQuest Pharmaceuticals Raises Additional $4M to Bring Total to $16M in Series B Financing

July 30, 2010


HemaQuest Pharmaceuticals, a clinical stage biotechnology company developing small molecule therapeutics for sickle cell disease, beta thalassemia and EBV-related cancers, announced today the closing of an additional $4M to its Series B financing by new investor, Latterell Venture Partners. This investment brings the total Series B financing to $16M. The financing is intended to help advance HemaQuest’s two lead products, HQK-1001 and HQK-1004, through Phase 2b clinical trials. Latterell Venture Partners joins the HemaQuest investor syndicate which includes Aberdare Ventures, De Novo Ventures, Forward Ventures and Lilly Ventures. In conjunction with the financing, James Woody, MD, PhD, General Partner at Latterell Venture Partners, has joined HemaQuest’s Board of Directors.

“HemaQuest is focusing on much needed clinical therapies for serious and life threatening orphan diseases. As a clinician who has cared for such patients, it is clear the unmet need is large and there is a significant need for novel new medications,” said Dr. Woody. “The company, with excellent leadership and considerable skill in the hematology and oncology space, has made great progress with the two lead compounds, with promising results in early clinical trials. We look forward to working closely with our colleagues at HemaQuest to advance these important drugs into registration trials, and eventually to patients.”

Fred Dotzler, Managing Director of De Novo Ventures and HemaQuest’s Chairman of the Board, said, “The investment by Latterell Venture Partners provides further validation to the Company’s technologies and progress in developing programs for its two lead products. We are delighted to have the very talented Jim Woody join the Board of Directors.”

HemaQuest Pharmaceuticals ( is a Seattle-based biopharmaceutical company focused on developing small molecule therapeutics based on its proprietary short chain fatty acid technologies to treat orphan hematologic diseases. HQK-1001 is an orally administered small molecule therapeutic being developed to treat the two most common hemoglobin disorders, sickle cell disease and beta thalassemia. The drug candidate has advanced through Phase 1 clinical trials and is completing testing in proof of concept clinical studies in patients with sickle cell disease and beta thalassemia. HQK-1004 is a unique therapy designed to treat malignancies associated with Epstein-Barr virus. A Phase 2 clinical trial is being initiated with this drug candidate.

Singing for a cause

July 30, 2010


Top corporate bosses lend their hand for a noble cause. At a fundraiser organised by Genesis Foundation this past week, aptly titled ‘CEOs Sing for their Supper’, CEOs from nine blue chip companies performed at the Crowne Plaza Today in Gurgaon.

It was indeed a music show with a difference as corporate bigwigs strummed their guitars and showcased their singing prowess before an enthused weekend audience. It also went on to prove that academic merit and professional success could in no way inhibit creative sensibilities developed during student days. Moreover, it also underlined the fact that commitment to social causes remained high on the priority of people who have managed to climb the success ladder.

At a fundraiser organised by Genesis Foundation this past week, aptly titled ‘CEOs Sing for their Supper’, CEOs from nine blue chip companies performed at the Crowne Plaza Today in Gurgaon. The aim was to collect money to be utilised to save the lives of critically ill children who are either orphans or come from less privileged families. The Foundation was formed with an avowed objective to provide financial support and medical intervention for critically ill orphans or children whose family income is less than Rs.5000 per month, with the focus area of support being cancer, heart, organ failure, thalassemia and extreme deformities.

Amongst those who performed during the evening were Niren Chaudhary, CEO, Yum Restaurants, Geetu Verma, Executive Director, PepsiCo India, Gopal Sarma, MD, Feedback Ventures and Shireesh Joshi, Director Marketing, Airtel. It was an eclectic mix of Hindi and English numbers, although, almost all were of an earlier vintage, something that went to prove that current genre of music has not been able to etch a permanent place in the heart of these music aficionados. It was an exciting format where the guests judged each performance and the winner selected a partner to join him/her in a grand supper.

The Foundation’s Goodwill Ambassador, Parvathy Omanakuttan, Miss India 2008, compered the event. Around 120 people purchased a place at the table for Supper in the effort to help raise funds to save the lives of nine children.

Modhesh Friends Forum participants visit Dubai Thalassemia Center

July 30, 2010


Children participating in Modhesh Friends Forum, organised by Dubai eGovernment as part of Dubai Summer Surprises 2010 being held from June 17 to August 7, were recently taken on a visit to the Dubai Thalassemia Center in Al Wasl Hospital. The children were accompanied by representatives from Dubai eGovernment, supervisors of Modhesh Friends Forum, in addition to several specialist doctors and staff from the Thalassemia Center, who together were focused on bringing a smile to the faces of thalassemia-afflicted children. Modhesh, the ever smiling character was also present to cheer up the children.

The visit to the center underlines Dubai eGovernment’s strong commitment to corporate social responsibility efforts, which benefit all community segments, including children diagnosed with thalassemia. Dubai Thalassemia Center is the UAE’s first specialized center to provide support and care to thalassemia-afflicted people.

The visit by Modhesh Friends Forum participants featured an informative presentation about Thalassemia, its stages of development, diagnosis, and the medical services offered by the center. It also featured an entertaining performance by Modhesh, followed by the distribution of special gifts to the children at the center.

Boy needs aid for transplant

July 30, 2010


A 10-year-old boy suffering from thalassemia since he was one desperately needs a stem cell transplant.

Liew Chon Kong has been undergoing blood transfusions every month at the Sultanah Aminah Hospital since he was four.

Lam Mei Lin, 37, said Chon Kong, the elder of two sons, has been suffering from constant headaches and extreme fatigue since young.

“The doctors have said the best option now is to go for the transplant, as frequent blood transfusions put him at risk of an iron overload.

“Such overload can damage his heart and liver,” she told a press conference organised by Johor MCA Public Complaints Bureau chief Chia Song Cheng.

Lam, an administration officer at a factory, added that none of her family members had matching stem cells.

She had spent more than RM28,000 to search for a match via the Sultanah Aminah Hospital as well other hospitals in Singapore, but to no avail.

“I have since consulted a transplant team at Chang Gung Memorial Hospital in Taiwan, who has informed us that they have found a match.

“However, the suitable stem cells as well as the transplant cost about RM350,000 and the surgery is scheduled for October,” she said, adding that her husband was an air-conditioning technician.

Lam added that she had managed to collect RM50,000, but needed help from the public to raise the rest of the amount.

“I appeal to the public for their kindness as my son’s life depends on the surgery,” she said.

Chia hoped people could show their kindness to Chon Kong’s family.

Well-wishers can contact the Johor MCA headquarters at 07-2233915; or write to the party state headquarters at Fifth Floor, Bangunan MCA Negri Johor, Jalan Segget, 80,000 Johor Baru.

Blood donors supply Emily the gift of life

July 24, 2010


EMILY Alcantra loves hip hop dancing, cheerleading, playing netball and going to the movies with her friends – just like many other active teenage girls.

But she’s only alive because of regular blood transfusions.

Emily was born with the life-threatening blood disorder, thalassemia. The condition affects her ability to make red blood cells.

Royal Children’s Hospital pediatric haematologist Jeremy Robertson said Emily would have died in early childhood without monthly blood transfusions.

“Genetically, she can’t make enough haemoglobin so that she’s chronically anaemic,” he said.

Except for spending one day every four weeks in hospital receiving a litre of blood – equivalent to about three or four donations – Emily lives a “normal life”.

Emily, a Year 8 student at St Paul’s School in Bald Hills, on Brisbane’s northside, said she felt no different to her friends.

“It’s kind of like it’s not even there, despite the visits to hospital and stuff,” she said.

“I’m very, very grateful to the blood donors. If it wasn’t for them, I wouldn’t be here.”

Westwood woman running in the home of the original marathon

July 24, 2010


Victoria Koutris, of Westwood, will be running the Athens Marathon in October to raise money to fight a genetic blood disorder that affects people of Mediterranean descent.

Koutris hopes to raise $4,900 by Aug. 25 in donations to the AHEPA Cooley’s Anemia Foundation.

Koutris, 20, has lived in Westwood all her life. Her father came to the U.S. from Greece in his early twenties.

She got an email from an aunt in Greece asking if she was interested in running the Athens Marathon.

“This was an opportunity I could not pass by,” Koutris said. “ I knew I had to do this. I have always been very athletic, although I had not thought I would be running a marathon at 20.”

Koutris is a junior at the University of Massachusetts-Amherst, majoring in sports management and marketing. Last semester Koutris spent five months in Australia working as an intern for a rugby team, where she was involved in sponsorship and marketing.

The Athens Marathon is on Oct. 31.

Cooley’s anemia, commonly referred to as thalassemia major, is the most severe form of a group of fatal genetic blood disorders that mainly affect Greeks and Italians. There is no cure for the disease so far. To prevent early death from organ failure, patients require frequent blood transfusions. Patients are diagnosed before they reach their first birthday.

“Thalassemia gets its name from Greek,” Koutris said. “Thalassa means sea and ‘aima’ stands for blood. Twenty million people in the U.S. have the minor form of thalassemia and don’t even know it. They can pass it on to their children in the major form, which is fatal. You must inherit the defective gene from both parents to develop thalassemia major. Patients of this disease have to go to the hospital every two or three weeks for a blood transfusion. Then they get too much iron in their body and need chelation therapy to get rid of the extra iron.”

Koutris has started training for the Athens Marathon. This year it will be the 2,500th anniversary when the legendary soldier Phidippides ran from Marathon to Athens to inform Athenians of Greek victory against the Persians.

So far Koutris has raised $3,000 and she is hoping that more people will contribute to her cause.

“Although none of my immediate family have been affected by thalassemia major, I want to make a contribution,” Koutris said. “ Nobody should ever have to suffer from this disease. Not a single penny goes to me. It all goes to the Foundation. I am so determined, that’s who I am. Everyone has been so supportive of me, which gives me more motivation to do it. I am eager to participate in the 2010 Athens Marathon and trust it will be a tremendous experience that will provide memories to last a lifetime.”

Contribute to Koutris’s fundraising effort by either online at or send a check to P.O. Box 2564, Westwood, MA 02090.

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