Noah’s Ride: In Memory of Noah Asid

Noah’s Ride: In Memory of Noah Asid

Hanover, Pa. – On Saturday, August 17th, a 70-mile motorcycle ride will take place in memory of Noah Asid. Noah was attending a camp in Maryland when he was struck by a tree and suffered a severe head injury. Noah was 9 years old. He was also an organ donor.

Registration will take place at the Hanover Eagles #1406 location at 105 Park Street from 9am to 11am. The cost is $10 per rider and $5 per passenger and all proceeds benefit The Living Legacy Foundation of Maryland. The Living Legacy Foundation facilitates the donation and recovery of human organs and tissues for transplantation and research. The LLF provides advocacy, family support and comprehensive public and professional education, and are committed to organizational excellence to enhance the organ and tissue donation and allocation processes. All vehicles are welcome and the ride will start promptly at 11am.

There will be three stops along the way with the final stop being at Goofy’s in Spring Grove, PA. Other stops include Dockside Willies in Wormleysburg, Moe’s Bar & Grill in Mechanicsburg and Dylan’s Restaurant & Bar in East Berlin.

For more information about the ride, please contact Kathy Asid at 443-375-6085

To learn more about organ donation, please visit www.thellf.org

Update: To view photos from the event please visit our Facebook album here: https://www.facebook.com/media/set/?set=a.654758927875995.1073741827.284017424950149&type=1&l=47f4ed0114

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Maryland Transplant Recipients Attend World Transplant Games in South Africa

Maryland Transplant Recipients Attend World Transplant Games in South Africa
By Lisa McAllister

The Living Legacy Foundation prides itself on being involved in our donor and recipients lives well after surgery. One way we stay connected to recipients is through our participation with the World Transplant Games and the Transplant Games of America.

The 2013 World Transplant Games were held from July 28th – August 4th in Durban, South Africa. Recipients who have received life-saving organ transplants from more than 55 countries worldwide competed in various sports in the hopes of winning Gold, Silver and Bronze medals for their country! The Games celebrated the triumph of the human spirit and the hope that is behind every transplant.

Mike Butler, a dedicated Living Legacy volunteer and kidney/pancreas recipient from Hagerstown Maryland, traveled to South Africa to compete in the 2013 World Transplant Games this year.

He shared some of his photos with us! To view more, please visit our album on our Facebook page! Kerry Murphy, a heart recipient from Eldersburg and Hilary Hoagwood, a two time liver recipient from Odenton, also attended the games.

Mike, a veteran of three World Games now, says that he really enjoys the competition that the World Games provides. “You compete against the best transplant athletes in the world. We share stories, laughs and some tears. Getting to meet new and wonderful friends, and reacquaint with the old friends is wonderful. We also talk about how transplantation works in other countries. But most of all, what I do at the Games, in the public, and in my life is the most important. I carry ‘Kelly’s spirit’ (my donor), on in everything I do in life, taking full advantage of my second chance.”

Although Mike didn’t win a medal in this year’s Games, he did place fourth in the men’s discus and fifth in the men’s javelin. He also participated in the shot put, lawn bowling, and is a member of the Team USA volleyball team.

Kerry won a bronze medal in the women’s cricket ball throw. She is a member of the bronze medal women’s 4×100 and 4×400 meter relay teams in track and field securing a total of three bronze medals! She also participated in the 5k run, shot put, discus, and 100 meter dash.

Hilary won a silver medal in the 50 meter butterfly and 100 meter breaststroke. She also swam the 100 meter freestyle, and is a member of the freestyle relay team in swimming. She won a bronze medal in women’s singles tennis. She also participated in the 100 meter dash. Hilary received a total of 2 silver medals, and 1 bronze medal!

The World Transplant Summer Games embrace all ages; anyone from 4 to 80 years old who qualifies is welcome to participate. There are more than 50 events to suit all capabilities including Track & Field events, Cycling, Road Races, Swimming, Golf, Tennis, Table-tennis, Badminton, Squash, Lawn bowls, Volleyball, Petanque & Tenpin Bowling. The athletic standards at Summer Games is high. The 100-metres has a competition record of 11.18 seconds and the long jump 6.85-metres.

Results have been tallied and Team USA finished second in the medal count behind United Kingdom/Northern Ireland. Team USA won a total of 85 medals in these games. Way to go Team USA!

For more information about the World Transplant Games, visit http://www.wtg2013.com/index.htm

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The LLF is even more involved with Transplant Games of America which takes place in Houston in July 2014. Like the World Transplant Games, the Transplant Games of America is a multi-sport festival event for athletes who have undergone life-­saving transplant surgeries and living donors.  Team Maryland is already fundraising and having monthly meetings to prepare for the 2014 games and hope to increase its team members for all sports. All ages are welcome! If you are interested in signing up for Team Maryland, please contact the Team Maryland Manager, Latrice Price at lprice@thellf.org

Go Team Maryland!

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National Minority Donor Awareness Week 2013

  
National Minority Donor Awareness week, August 1-8, is a nationally observance to educate minorities on the desperate need for donation and transplantation. With more than half of Maryland’s transplant waitlist made up of multicultural populations, The Living Legacy Foundation is taking this week as an opportunity to empower and motivate these communities in to action.

Celebrate National Minority Donor Awareness Week by registering to be an organ, eye and tissue donor.

Celebrate National Minority Donor Awareness Week by registering as an organ, eye and tissue donor.

There are many reasons minorities are the most in need. African Americans, Latinos and Asian Pacific Americans are three times more likely to suffer from end-stage renal disease than Caucasians resulting in the need for a kidney transplant. In 2012, 40 percent of those receiving transplants in the United States were minorities and 70 percent of minority transplant recipients received kidneys.* Unfortunately, in 2012, only 32 percent of minorities were designated donors in Maryland. It’s obvious our message is more important than ever.  

Although it is possible for a transplant candidate to match a donor from another racial or ethnic group, transplant success rates increase when organs are matched between members of the same ethnic background. Therefore, the shortage of organs donated by minorities’ results in a longer wait for those in need.  The Living Legacy Foundation recognizes these facts, and has developed specific events aimed at educating the community such as GospelFest and National Hispanic Heritage Month celebration.

At GospelFest, we celebrate through music bringing different singing groups together to help celebrate and share the message of life through organ, eye, and tissue donation. We also invite donor families and recipients to share their stories. Each year, GospelFest is held in a different church in Baltimore City. We hope this faith outreach celebration encourages minorities to share their personal connection to donation and inspire others to register as an organ, eye and tissue donor.

During National Hispanic Heritage Month this year, The LLF will be working with local Mexican restaurants to become involved in raising awareness for organ, eye and tissue donation with informative table tents to be placed in participating restaurants to make the Hispanic community aware of our cause.

Also, in partnership with the Baltimore City Police Department, The LLF participates in city events called Day of Hope, which aims to bring, hope to people less fortunate in the community. During these events, The LLF works alongside other non-profit community partners to offer resources such as healthcare, nutrition, personal grooming and city programs to help them with living expenses. We take this opportunity to inform the community about essential donation facts.

Locally, there are more than 2,600 people waiting for a life-saving organ transplant in Maryland and of those 1,409 are minorities. It is important to remember organ donation is a selfless act which costs nothing to the donor or the family. One person has the potential to save nine lives, enhance the lives of 50 people and restore sight for two people. Donation is supported by all major religions as one of the highest expressions of compassion and generosity. No one is ever too old to give the gift of life, it’s something we all have the ability to do. Together we can all give someone a second chance.

For more information on the donation process and myths and misconceptions, please visit www.thellf.org

To register as an organ, eye and tissue donor, visit www.donatelifemaryland.org.

*www.organdonor.gov

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Living Proof Organ Donation Saves Lives

Living Proof Organ Donation Saves Lives
By Lisa McAllister

Athena Shry is 20 years old. She is a junior at York College of PA, majoring in marketing and minoring in environmental sustainable policy. Athena is a member of the phi mu ΦΜ sorority and loves participating in the numerous philanthropic events the sorority supports.  Her dream job: Anything to do with Costa Rica. Athena, to the outside world, is a typical 20 year old. However, Athena is celebrating her 20th anniversary as a heart recipient and that is truly exciting.

Athena, her brother Mike and mother Cathy posing before Mike's prom

Athena, her brother Mike and mother Cathy posing before Mike’s prom

Athena was born with a congenital heart disease called pulmonary atresia. Pulmonary atresia is a disease in which the pulmonary valve does not develop; therefore, blood cannot pass from the heart to the lungs for oxygen.

At just one day old, Athena underwent two separate cardiac catheterization procedures. At two days old, she had open heart surgery and received a shunt to function in place of the valve. Unfortunately, during this surgery it was discovered there were several other problems with her heart. Ultimately it was determined Athena would need a heart transplant to survive and was placed on the transplant list.

Eight days later, Athena was healthy enough to go home from the hospital and wait for a miracle. Nearly seven weeks later, Athena’s parents received the call a donor was found and Athena received her new heart.

Now, looking back 20 years later, Athena and her family are forever grateful. “Not a day goes by where we don’t think about her donor and donor family,” said Cathy Shry, Athena’s mom.

Athena also reflects on the impact this has had on her life. “It’s how my life has always been so I don’t know any better and it feels like mine. But I’m grateful that I’ve been lucky enough to not really be sick.” Like many pediatric transplant recipients, Athena does not have any limitations on her physical activities. In 2008 and 2010, she competed in racquetball, bowling, volleyball and track and field at the Transplant Games of America, an Olympic-style athletic games developed to celebrate the power of organ and tissue donation and transplantation. Although she didn’t play in 2012, she’s thinking about participating in 2014 when the games are played in Texas. “I’ve always wanted to go to Texas. This seems like the perfect opportunity. I’ll probably play volleyball again and maybe track and field.”

Athena at the 2008 Transplant Games of America

Athena at the 2008 Transplant Games of America

Her family has been supportive from day one and many of them traveled to support her participation at the Transplant Games. After her transplant, Athena’s parents wrote two letters to the donor family but never received a response. “At my high school graduation and prom, I thought about trying to reach out again,” Athena says, “but it takes a lot of courage and thought and it just never came to be. How do you thank someone for the life you have? What do you say?”

Right now, Athena is focusing on school and the transition she is making from pediatric care to adult care at The Johns Hopkins. She visits the doctor every three months and has tests done once a year. The transition means she will not have to see the doctor as often, something Athena is looking forward to. “I’m so blessed. Everyone at The Johns Hopkins is so wonderful. I’ve gotten the best care. And I’m lucky to be on little medication, so for now, I’m just hoping to stay on this plan for the rest of my life.”

For more information about organ donation and to sign up, please visit www.takeaminutesavealife.org

It only takes a minute to do something great. Athena will attest to that.

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Funeral Home Relationships

Funeral Home Relationships
By Kendra Harris

At The Living Legacy Foundation, we take pride in building strong relationships with all of our partners in the community that help support organ and tissue donation.  We appreciate that without these solid connections the donation process would not be as successful as it is today. Over the years we have created a significant relationship with the funeral home community. This collaboration ensures the families we both share have the opportunity to offer the most important gift, the gift of life.

We work with funeral homes on a regular basis, constantly keeping them informed of our process to help guarantee that donor families are properly cared for. This open form of communication is imperative between The LLF and funeral homes as we share the same goal – to preserve the option of donation and to protect our donor families. One of our partners, Staci Sphar of Evans Funeral Chapel of Parkville says, “Being able to see the dedication The LLF has for the families they service is a reflection of the help we provide to families every day. The support and dedication to families is what drives the directors and staff of Evans Funeral Chapel and Cremation Services to be committed to their work and their families.” This example of support is what helps keep the lines of communication strong and clear and to assure that all donor families are respected.

The Living Legacy Foundation is lucky to work with numerous funeral directors across Maryland and the mutual respect we have obtained proves to be worthwhile.  We are proud to recognize several of our partners that have participated in The LLF events like our Donate Life Family Fun Run, workshops and open houses. Mike Marzullo of Marzullo Funeral Chapel states, “I attended the Donor Ceremony of Remembrance because there are families here that we serve personally.  Marzullo Funeral Chapel wants to show the people that we care, just as The Living Legacy Foundation does.” As our funeral home partners become more and more engaged in The Living Legacy Foundation’s events, the culture of donation will only continue to evolve as our message is shared with others.

The Living Legacy Foundation also works collaboratively with the Maryland State Funeral Directors Association and the Maryland State Board of Morticians to help circulate information on upcoming webinars and continuing education programs.   We are proud to continue fostering relationships with our funeral home partners, and maintain an open dialogue to combat any misconceptions or lack of understanding about the organ and tissue donation process.  It is evident that by working together, funeral directors and the organ procurement organization will truly benefit from this unique relationship. “We support The Living Legacy Foundation of Maryland as they support and help others because we believe that it is important to honor a person who passed and to honor their life.  By being a donor they are giving the gift of life, the ultimate honor. We are proud to be able to stand with The Living Legacy Foundation of Maryland and continue our support” says Sphar.

As we look to the future, The LLF will continue to expand its relationships.  Recently, a Funeral Home Action Committee was developed to help serve as a resource for our staff and the funeral home community. The committee’s goal is to focus our efforts on providing the highest quality of service for our donor families and to help maintain that constant communication.  The workgroup is another way to strengthen our bonds and maintain a beneficial working relationship with our partners. We appreciate all the support we receive from the community and hope to grow by spreading our message of awareness to others.

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Kendra Harris and Mike Marzullo

For more information about our funeral home partnership or the Funeral Home Action Committee, please contact Kendra Harris at kharris@thellf.org

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4th of July Parade!

For the third year in a row, The LLF’s staff and volunteers walked in Catonsville’s annual 4th of July Parade!

Our team of volunteers was made up of two kidney recipients, a liver recipient and their families. We were also joined by a donor mom walking in honor of her son.

We gave away tons of green beads, fans, mints and t-shirts to the eager parade watchers!

Below are some of the photos we wanted to share. Please let us know if you want to join in the fun in 2014! Or, for other volunteer opportunities, sign up here!

The LLF Van getting dressed up for the parade!

The LLF Van getting dressed up for the parade!

Some of our lovely volunteers!

Some of our lovely volunteers!

Some of our lovely volunteers and staff!

More volunteers and staff!

For more photos from this event, please visit our Facebook page and look for the 4th of July photo album! Feel free to share your event photos on our page!

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Ceremony of Remembrance

LLF LogoEach and every day, The Living Legacy Foundation is humbled by the compassion and generosity of our donors and their families. Without these individuals, we would be unable to fulfill our mission of saving and enhancing lives through organ and tissue donation and transplantation. Though there are no words or gestures that can truly express the depth of our gratitude, one small way we honor donors and their families is through the Ceremony of Remembrance.

On Sunday, June 2, The LLF held its annual Ceremony of Remembrance to celebrate all of our organ and tissue donors and their families. This annual event allows us to come together as a donation community to honor and remember the legacy of life left by our donors and to reflect on this year’s theme “With the Love you Left Behind”. The ceremony was well attended with approximately 800 family members, community members, LLF staff, and volunteers.

We were grateful to have two recipients available to speak. Danette Ragin shared her kidney transplant story with the audience and Allison Sklarew shared her heart transplant story.  Both of their stories were reflective of their gratitude to be given a second chance and all the positive ways their lives have been transformed since they received their transplants.

A new addition this year was a children’s grief workshop held in the kid’s room during the ceremony.  This was led by our colleague, Susan, from the Hospice of the Chesapeake.  Almost 30 children were involved in sharing their emotions and building a “healing heart” for them to take home.

We also received feedback from multiple family members expressing how meaningful the ceremony was to them.  Some families have asked for copies of what our presenters shared and our recipient presentations.  Below, we share those poems and readings.

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By David Harkins
Adapted for the LLF Ceremony of Remembrance

We can shed tears that they are gone
Or smile because they were here
We can close our eyes and pray they’ll come back
Or open our eyes and see all they left for us
Our hearts can be empty because we can’t see them
Or they can be full of the love we shared
We can turn our backs on tomorrow and live in yesterday
Or be happy for tomorrow because of yesterday
We can remember them and only focus on them being gone
Or cherish their memory and help it live on
We can cry, close our minds, and turn our backs in sorrow
Or we can do what they’d want
Smile, open our eyes, love, live …….. and go on

May You Find Serenity
Author Unknown
Credit provided for excerpts from full text, with other original words by Karen Kennedy

 May you find serenity and tranquility in a world we may not always understand.  May the pain of your loss ultimately give you the strength to keep walking and face new challenges with courage and optimism. Always know there are those whose love will be there for you, even when you feel most alone. May a kind word, a reassuring touch, and a warm smile grace you every day of your life going forward.

May you find the strength to carry on and see the future as one filled with promise and possibility and be guided by the love and the legacy of your beloved, whose love has been left behind.

Just a Memory Away
By Rita Beer

I’m no longer by your side, but there’s no need to weep
I’ve left sweet memories I am hoping you will keep
Our joys and our memories stay in our hearts forever
Strengthening our special bond that parting cannot sever
Now it is time to carry on, so let your faith be strong
For I have gone to another place and am now where I belong
And as my loss brings you sorrow and dismay
Please don’t despair for I am here – just a memory away

The Path
By Rebecca Helbein

 You leave behind such memories that loved ones hold dear
They’ll take those down the path of their lives, though right now that path seems unclear

Today we gather together as you watch from above
And learn to walk a new life path, now lit with your love

Your light will never really fade, it actually gets brighter every day
As you lead them down their path of life, and show them how to carry on and lead the way

So continue your journey today, dear friends, and keep working through the pain
Your loved one’s light still shines bright and will guide you again and again

Posted in Community Education, Community Outreach, Donor Families, LLF Staff, Team Maryland, Transplant Recipients, Volunteers | Tagged , , , , , , , , , , , | 2 Comments