Over 30,000 men, women and children in the United States are suffering from cystic fibrosis. It is a life threatening genetic disease in which breathing and daily living is difficult to endure.

Cystic Fibrosis causes mucus to build up and clog certain organs in a person’s body, especially the lungs and pancreas. The thick mucus makes it difficult to breathe, and also leads to bacterial infections which can cause lung damage.

More than 45% of all Cystic Fibrosis patients are under the age of 18 in the United States. According to the CF Foundation, the average life span of a patient of cystic fibrosis was in the mid-30s. Because of continued research and awareness, life expectancy of patients are growing, although there is no cure for the disease at this time.

Cystic Fibrosis patients have been able to receive a lunge transplant to prolong their life and to improve their breathing. According to the CF Foundation, nearly 2,800 people with Cystic Fibrosis have received lung transplants since 1900. Between 150-200 patients have received lung transplants per year throughout the past five years. Over 50 percent of cystic fibrosis patients who received lung transplants are alive after 5 months of their surgery.

During Cystic Fibrosis Awareness Month, take time to learn about how you and your community can help aid research studies so that new treatments, and eventually a cure can be found to extinguish Cystic Fibrosis. Visit the Cystic Fibrosis Foundation website to learn how you can raise awareness and give hope the thousands!

To learn more about lung transplantation, visit our website.

Today we share the story of how one local company is honoring the memory of one of their own by celebrating the gift of life he was able to give through organ donation. Danny Glover was only 24 when his life was cut short in late January 2012.  Although he had only worked at Troegs Brewery for a short amount of time, his compassionate and kind personality left a lasting impact on his co-workers. Ed Yashinsky, Brewery Manager, shared why Troegs decided to create a special brew in Danny’s memory, and donating a portion of each sale to Gift of Life Donor Program.

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How was Danny Glover part of the Troegss brewing family?

Danny worked at Troegs on the packaging line for about nine months.

How would you describe Danny and his dedication to his family and friends?

Danny was very much a people-person and his family was absolutely important to him – that was proven at his funeral when you met so many people from so many parts of his life came together to say good-bye to him. After attending his funeral, it was obvious that we were lucky just to know such a good guy.

How has Danny’s passing affected the community and Troegs brewery?

We’re a pretty small company made up predominantly of people in their 20s and 30s, and when someone is here one day and gone the next it’s hard to comprehend that. There has been a lot of laughing and a lot of crying since he passed away but overall we’re doing ok. Putting out this beer is a really nice way to pay tribute to Danny.

What was the reaction when everyone learned that Danny was an organ and tissue donor?

We only found out at the funeral when they started talking about it. His parents made a valiant decision at a very tough time, but ultimately, Danny being an organ donor fits in line perfectly with his personality and nature – he was always a very giving guy.

Has Danny’s gift of life changed or affected anyone’s outlook on donation?

Personally, I have had an Organ Donor designation on my license since they started issuing them. I can’t say that we, as a company, have discussed this subject as a whole, but I have a strong feeling that many Troegs co-workers have looked into it since finding out about Danny’s donation.

Why did Troegs Brewery decide to create a special IPA for Danny?

Well, it’s something unique we can do. Soon after we heard that Danny had passed away the idea of making a beer for him came up and giving part of the proceeds to Danny’s family. At the funeral we talked to Danny’s family about it and his mom said if we did anything all proceeds should be directed to the Gift of Life program.

How did you come up with the special formula?

Danny’s favorite beer was one of our seasonals – Nugget Nectar. Since we wanted to do something special for him and he loved hoppy beers we started with concept of Nugget Nectar but changed it into something new. It’s a Black IPA which means it’s dark in color and aggressively hopped. The beer turned out tremendously.

The release event was a success. It’s hard to have a celebration when the person you are celebrating can’t be at the event, but  many of Dan’s family and friends came to the brewery for the release date. And our employees made sure to come out and toast Dan at the end of their workday. It was bittersweet. The beer has sold quite well – we should be sold out in about a week or so. The feedback has been great on the beer.

What would you like people to take away from Danny’s donation story?

That even in death Danny continued to help and serve people – it’s an amazing story.

Gift of Life Donor Program, CORE and Donate Life Pennsylvania have teamed up with the PA Department of Health to raise awareness for donation while having fun in the community at the same time.  Within the upcoming months, we will be working with the partnering organizations to present AND1 LIVE! Streetball Tour in four Pennsylvania cities.

The first AND1 LIVE! Tour PA event will take place on Friday, May 18 from 6 – 9 p.m in Harrisburg High School’s Kimber Gymnasium, located at 2451 Market Street in Harrisburg. Donate Life-PA’s goals will be to inform attendees about the importance of organ donation and to dispel the common myths and misconceptions surrounding organ donation. To do this, Donate Life-PA will be speaking to the audience to talk about the urgent need for organ and tissue donation and dispelling the myths and misconceptions that surround becoming a donor.

The AND1 LIVE! Tour highlights the talents of some of Streetball’s leading stars. The mission of the tour is to serve the community and promote positive and healthy role models for today’s youth. Through the partnership, Donate Life-PA hopes to raise awareness of organ and tissue donation in the multicultural community as well as the 18-24 age group.

During the next few months Donate Life-Pa will emphasize registration among minority donors because they provide the greatest hope for the more than 2,700 African Americans in Pennsylvania awaiting an organ or tissue transplant. Individuals of the same ethnic background are most likely to have similar blood types and make good donor matches.

Right now African Americans represent 32 percent of Pennsylvanians waiting for organ donor transplants but only 11 percent of Pennsylvania’s total population. The current shortage of minority donors means 64 percent of African Americans in Pennsylvania waiting for an organ transplant have been on the waiting list for more than one year, and nearly eight percent have been waiting for five or more years.

Keep visiting our Facebook, Twitter and website to stay up-to-date on the latest And1 PA events, as well as other upcoming donation community events this summer!

Gift of Life Donor Program participated in a Tweet Chat on May 1 in light of Facebook’s recent partnership with Donate Life America to promote your decision to donate on your own Facebook Timeline. Donate Life America President & CEO David Fleming helped to initiate the chat, which was moderated by ABC’s Dr. Richard Besser (@abcDrBchat). Others who were represented within the chat included many Donate Life states, Donate Life America (@DonateLife_), recipients, donor family members and general supporters of donation. Gift of Life Donor Program (@donors1) also took part in the conversation!

A Tweet Chat is a discussion in real-time that happens through Twitter with a predefined hashtag (#). Tweets are linked together and a virtual conversation takes place. Often tweet chats occur with a pre-determined agenda and certain topics are covered and discussed as per the moderator’s instructions.

Gift of Life (@donors1) was able to join the conversation on organ donation to answer some questions and tackle some of the myths out there. The chat, which took place through the hashtag #ABCDrBchat, lasted an hour and covered many topics as well as gave participants an opportunity to talk about their connection to donation. Participants also discussed where people can go to find out information on donation, such as at donors1.org. Finally, the chat promoted how Facebook users can now share their decision to donate on their Timelines.

For a transcript of the Donate Life America Twitter chat, click here

Today we share the story of  one young adult who is raising awareness for organ donation by running for Brotherly Love- literally. Chris Praetzel shares why he has decided to run across America in honor of his brother, a transplant recipient.

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Chris Praetzel, Brian Praetzel and Jamie Cifuentes

My brother Brian Praetzel had a kidney transplant back on February 18, 1996 at St. Christopher’s Hospital in Philadelphia. Brian  was born on December 6, 1992 with hypoplastic kidneys, and from birth the doctors gave little hope for his survival. Luckily doctors were able to find a match and with a successful transplant he was able to live on. We keep in touch with the family of whom the kidney came from and exchange Christmas gifts as well as photographs of Brian. This allows the family to see how their gift of transplantation has touched our family and see all of the positives of their loved one living on through him. My brother must take medicine twice a day as well as have regular visits to Children’s Hospital in Philadelphia. Living with an organ donor recipient is not very different but playing sports growing up we always had to be careful in limiting contact and also to make sure he wore his protective vest to cover the kidney. However, he was just as active as the rest of us, and definitely a necessary piece of our neighborhood basketball, baseball, and football. Brian played soccer on a club team in our town as well as baseball. In high school he also ran track his freshman and sophomore year.

Growing up I was involved with the organ donor community through  participating a couple of years in the Organ Donor Dash along with my family. This year I also ran in the Organ donor Dash with my good friend Jaime Cifuentes and brother Brian. I spent the race just jogging along with them and sharing the experience. Prior to the race, just being a part of the atmosphere and seeing all for the teams in honor of loved ones living and passed on, I got a lump in my throat while somewhat overcome with emotion through understanding what brought everyone there that day.

The concept for the Brotherly Love Run began over two years ago. I can still remember the exact point in time where it crossed my mind to try such an endeavor. Both running across America and doing it for organ donor awareness existed as a single thought; it was never a matter of deciding I wanted to run across America but did not know what for. I still vividly remember sitting in my room thinking and deciding that it was something  I could do. From then, this dream has stuck in my mind almost daily. Initially family and friends did not take it seriously. They simply thought it was just another crazy idea of mine. However, as my past experiences and goals have shown to these two groups whatever I set out to do, I fully intend to achieve. Once Jaime heard he this, he wished to get involved, helping in any way he could.

I am a serious runner and have now run three marathons and one ultramarathon. I trained extensively for it and developed a regular lifting schedule. I have reached out to and have had several friends reach out to myself as well to help with survival training as this will be a solo journey, help in developing a website, and help with the creation of a logo. I also have been gathering my necessary supplies, going as minimalist as possible, which include a running stroller (as it is too much weight to carry on my back), tent, water containers, reflective vest, head lamp, and a few others. The route will take me ocean to ocean from Los Angeles to Atlantic City, NJ, a journey of about 3,029 miles.

Brian waiting for a kidney transplant in 1996

Through my run across America I hope to spread awareness about the need for organ transplantation as well as getting more people to register to be organ donors. I consider my brother Brian to be my best friend in the world in addition to being an awesome brother.  With over 113,000 people waiting on the list I would like to help others have the same blessing of a loved one who can continue to live on because of a transplant. I also am registered as an organ donor, and I hope when I pass away my organs can help make a difference in the life of someone who needs it. Once I’ve passed away I’ll have no use for them so I hope my story and journey can cause others to take the time to register.

For more information about Brotherly Love Run, visit their website.

With over 901 million active users on Facebook as of May 2012, it’s easy to understand how information can be easily shared with a click of a button. While many use the social networking page to share personal photos, party invitations, and gripes about their day- others have used the tool to bring social change to their online friends. Many members have asked for prayers or thoughts of sick loved ones, while others have reposted fundraising events to support certain charities.

Organizations, such as Donate Life America and Gift of Life have used Facebook to share stories of donation to our digital friends, in hopes that others will share the information with their friends, leading to more education in not only our communities, but on a global level. Now raising awareness for the power of donation through Facebook has become even easier, thanks to the new Facebook timeline milestone feature.

On May 1^st 2012, Donate Life America and Facebook announced that they are collaborating to encourage Facebook users to register as organ and tissue donors. Using the timeline feature, you can now add when you became a registered donor and add a personal story behind your decision to designate. Once you mark the milestone, all of your Facebook friends will be aware of your donation decision, and can learn more about how they can also register to become a donor. This is a great way to let your friends know about your decision in a matter of minutes!

With over a half billion users on Facebook, it can be expected stories behind the reason to register will vary. Some will be as simple as making the choice while receiving their driver’s license at the age of 16. Others will share the connection to donation through personal testimonials, allowing their online friends to get a better understanding of the impact of organ and tissue donation.

Once a Facebook user posts their registration milestone on their timeline, their Facebook friends will be able to view their update. On the milestone, there is a link for those not officially registered as a donor to sign up with the appropriate registry.

Take the time today to add your registration milestone to your  Facebook timeline. In the matter of minutes, your update may influence one person to make the choice to designate today!

To learn how to add the organ donation registration milestone to your Facebook timeline, watch this step-by-step tutorial video:

To learn more about Mark Zuckerberg’s dedication to raising awareness to organ and tissue donation using social media, watch his interview from ABC News

According to the U.S. Department of Heath and Human Services, “Despite the progress our nation has made over the past 50 years, racial and ethnic minorities still lag behind the general population on many health fronts.  Minorities are less likely to get the preventive care they need to stay healthy, more likely to suffer from serious illnesses, such as diabetes, heart disease and colon cancer, and they are less likely to have access to quality health care.”

In terms of organ and tissue donation, a growing number of minorities are awaiting transplants in both this region, and throughout the country. In fact, minorities comprise 54 percent of those waiting for life-saving transplants. Many diseases of the kidney, heart, lung, liver and pancreas that are prevalent in minority communities can be treated through transplantation.

For a FREE presentation, materials or participation in your multicultural affairs event or faith-based organization and to help share valuable information about organ and tissue donation in your minority community, contact Vanessa Duvert, Multicultural Outreach Coordinator at 1-800-DONORS-1 ext. 1172 or e-mail vduvert@donors1.org. You can also visit the community outreach section of our website to learn more about obtaining information!

THE Party of the year is only a few days away! Did you get your tickets yet?

Donors Are Heroes was co-founded by Renee Freeman after her husband received a heart transplant in 2000. The group consists of volunteers supporting the Gift of Life Donor Program and the Transplant Foundation throughout the year. One of their major fundraisers, The Party is a large upscale benefit to raise public awareness about the importance of becoming an organ and tissue donor.

Music, food, drinks and celebrations are featured throughout the night. This year, THE Party celebrates its 10^th year in style on April 27th at the Four Seasons Philadelphia. Honored guests of the night will include Bernard & Joan Spain.

The money raised from ticket sales will go directly to help maintain public awareness programs, school summits and teaching initiatives. All of which are geared to educate and dispel the myths surrounding becoming an organ donor and the need for life-saving, life-enhancing transplants.

Cynthia London, a donor mother, and Freeman were featured on Fox 29’s Good Day Philadelphia on April 24, 2012. You can watch their complete interview here.

Tickets, ranging from $75 to $250, are available here. We hope you will join us for a night to celebrate life.

It is hard to believe that the 17^th Annual Dash for Organ and Tissue Donation has come and gone! On Sunday, April 15, 2012, over 8,000 supporters came out to The Philadelphia Art Museum to take part in Gift of Life’s Annual Dash.

Participants ranged from all walks of life, from newborns attending their first Dash, to senior citizens celebrating with multiple generations of family members! Each Dash supporter connected with donation in a unique way, including donor families, transplant recipients, recipient family members, community volunteers, healthcare workers, and supporters of donation in general.

The Dash also paid tribute to donors through the dedication of two new Threads of Love Memorial Quilts. Donor family members led the 3k walk, with the two quilts leading the walkers. All participants were encouraged to share their reason for participating in The Dash through our clothesline tribute. It was a special way for donorr families, recipients, family members, and friends to pay tribute to those who have touched their lives through donation.

We would like to thank everyone who supported the Dash, from being their physically to those who were celebrating the day in spirit. Because of our volunteers and supporters, Gift of Life can continue to raise awareness about the life saving gift of donation, and the impact it has on everyone involved.

Photos from the 2012 Dash can be found on our Facebook page, and our Flickr page. Official team pictures can be ordered by visiting the McVey Photo website.

To see a recap of the 2012 Dash, make sure to watch our video of the big day!

The group focuses on how donor families can educate the public about organ and tissue donation, and acts as a support system for other families whose loved ones have made the generous decision to donate in their time of grief. Diane Milbourne, whose husband was a donor, has been a part of Hearts of Gold for over a decade. Through the members’ dedication, the coalition has evolved and grown to be a pillar of support to others who are experiencing similar situations.

“About 11 years ago I started attending Hearts of Gold meetings. I was stuck in a very dark place for a very long time after Ed’s death. I attended a widow/widower retreat. At the retreat, I met Father John Large. Father Large told the group that ‘time doesn’t heal; people heal, and healing begins when you make the decision to heal,” said Milbourne.

“Well, I came home from that retreat and made the decision to heal-I started attending Hearts of Gold.” Each month, Hearts of Gold members meet to talk about their life and lend a listening ear to one another.

Hearts of Gold meets at 6:30 p.m. on the second Wednesday of each month at Gift of Life Donor Programs offices in Philadelphia.

“Hearts of Gold volunteers educate people about the importance of organ donation. We mostly support other donor families by ‘being there” for them,” said Milboune.  “We attend the Donor Recognition Ceremonies, welcome new families to the meetings, and help them feel welcome if they attend the Transplant Games.”

Members of the coalition also are active in the community, education a wide variety of people about the power of donation through a donor family perspective.

“Some members speak about the importance of organ donation at their house of worship, health fairs, festivals, and we stock the DMV’s with organ donation material,” said Milbourne.

“We have some members who go out to schools to educate students about the importance of becoming organ donors. Volunteers have spoken to Rotary Clubs, Lions Clubs, DMV workers and to their co-workers.”

The men and women of The Hearts of Gold group also help coordinate the Wraps In Hugs program, as well as The Threads of Love Memorial Quilts. In addition, members have also volunteered at The Gift of Life Family House.

“Howard Nathan and all the Gift of Life staff are there for the donor families. The Hearts of Gold meetings, Donor Recognition Ceremonies, Team Philadelphia Donor Families and the Dash are all there to honor the donor and the donor’s family,” said Milbourne.

Milbourne and all of the members of Hearts of Gold will continue to work together to raise awareness, and support other donor family members.

“Mostly we are here to support donor families. I read somewhere that ‘Sometimes all a person needs is a hand to hold and a heart to understand. That’s what we do at the Hearts of Gold meetings.”

For more information, please contact Lara Moretti, Family Support Services at 1-800-DONORS-1, ext. 1103 or via email.