Tour de Light Rail Today!

Today I am doing the Tour de Light Rail Pub Crawl befitting the Hemophilia Association of Arizona. While getting ready to go out and be social and be active, what is my first thought?

To do my medicine. To Infuse. To do my factor. Whatever you want to call it, the chance of a bleed has to be the first thing on my mind when it comes to staying active. Even though it's not a prophylaxis day, I know I'm going to do a fair amount of walking today so I just infused before I'm set to head out for the Blood Brotherhood meeting at Macayo's before the pub crawl. If I didn't, I would regret it later.

This will be my first time going on the pub crawl and I'm really looking forward to it. It's a great way to raise money for the Hemophilia Association of Arizona. For nore information, visit the sites below.

• http://tourdelightrail.com/
• http://www.facebook.com/tourdelightrail (sign in first)

See you there!

Kilimanjaro Climb to Raise Money for Hemophilia

Save One Life founder Laurie Kelley is the mother of a child with the blood disorder hemophilia, and president of LA Kelley Communications, Inc., a company that creates and publishes educational materials for parents and patients. Kelley has been traveling to Africa since 1999 and was the first in the global hemophilia community to introduce hemophilia medicine in several African countries, and to begin establishing national care.

Hemophilia is a rare hereditary blood disorder affecting one in 5,000 male births. The 17,000 Americans with hemophilia receive blood-clotting medicine called “factor” to help their blood clot correctly. Untreated, bleeding can cause extreme pain, joint and muscle swelling, blood loss, anemia, crippling, and even death. Only 25% of the world’s estimated 400,000 with hemophilia receive treatment. Most patients in Africa remain undiagnosed, and factor is scarce. Funds from the climb will help outreach programs to identify more patients.

The climb is the brainchild of Eric Hill, president of BioRx, a company that distributes factor. He and employee Jeff Salantai, who has hemophilia, summited Mt. Rainer last year. Climber Neil Herson is president and founder of ASD Healthcare, a major distributor of biological products in the US. Originally from South Africa, Herson understands the challenges of limited healthcare in developing countries: “In addition to our fundraising goals, this climb will shine a spotlight on hemophilia care in Africa. We will inspire people to make a difference in the lives of people affected by this life-threatening blood disorder.”

At 19,340 ft., Kilimanjaro is Africa’s highest mountain. The six-day trek, starting August 6, takes climbers from tropical weather to sub-freezing temperatures at the summit, where oxygen is only 50% of that at sea level.

Funds raised from the climb will be used to support an outreach program in Zimbabwe; establish a post-secondary scholarship program in Kenya; prepare Tanzania and Ghana to launch Save One Life programs.

Save One Life was founded in 2001 and provides financial sponsorships for 750 people with hemophilia and related bleeding disorders in 11 countries.

For information: Martha Hopewell, Save One Life executive director, (978) 352-7652.
To sponsor a climber: http://www.SaveOneLife.net

Kilimanjaro Climb to Raise Money for Hemophilia

Mother raises awareness about son's rare disease

A local mom is determined to raise $2,000 by the end of the summer to help find a cure for her son’s rare disease.

Jennifer Ruklic’s three-year-old son Carter has hemophilia; an inherited disorder in which one of the proteins needed to form blood clots is missing or reduced. Hemophilia is passed down from mothers to sons in the X chromosome.

Ruklic is determined to raise the money for the Canadian Hemophilia Society’s Million Dollar Club with three bottle drives in Airdrie and Calgary over the summer.

Ruklic and her husband first discovered Carter had the disease after he was circumcised and bled an abnormal amount. Since then, the boy has had weekly injections of a clotting agent to ensure he doesn’t have internal or external bleeds.

“I want Carter to go through life as a normal little boy and finding the cure in his lifetime is the only way to do that. I can’t do that without the help of the public and their donations,” said Ruklic.

Ruklic recently created the charity Carter’s Quest for a Cure and is in the process of registering it. She is also the secretary for the Southern Alberta chapter of the Canadian Hemophilia Society.

“This has definitely made me more of a public speaker,” she said.

“Before this, I was a shy and quiet person. It’s not my privilege to be quiet anymore. I need to speak up and be my son’s voice and find a cure.”

Carter is part of a group of severe hemophiliacs with less than one per cent of the normal level of factor VIII or IX in the blood. The group has several hemorrhages a month and the bleeding is often the result of a minor bump or twist. Sometimes, there is no apparent cause for the bleeding.

Hemophilia A affects fewer than one in 10,000 people, or about 2,500 Canadians. In about 30 per cent of cases, there is no family history of the disorder and the condition is the result of a spontaneous gene mutation.

Ruklic said although it has been a challenge, it is getting easier because Carter can now tell her when he hurts himself.

“He is no longer wearing the helmet we had him in when he was a toddler and that really helps because he doesn’t get the sideways looks or the questions from other kids anymore,” she said. “However, he sees other kids playing and being so carefree and he is used to me being close to him and watching his every move. He’s more cautious than other kids but we try to keep things very normal for him.”

If you would like to donate bottles to the cause, drop them off in the driveway of 951 Windsong Drive marked with ‘Carter’s Quest’ or at Fox Springs Landscaping at 304-2903 Kingsview Blvd SE during the month of July. To learn more about the disease, visit the Canadian Hemophilia Society website at www.hemophilia.ca or Ruklic’s website www.cartersquest.weebly.com

Local mother raises awareness about son's rare disease | Acv - Local Entertainment | Airdrie City View

In the United States, refer to http://www.hemophilia.org for the National Hemophilia Foundation.