2013 Donate Life Family Fun Run Recap

On October 5, 2013, more than 2,200 runners, walkers and joggers joined together to participate in the fifth annual Donate Life Family Fun Run at Camden Yards Sports Complex in Baltimore. The Donate Life Family Fun Run is a non-competitive 5k run and 1k walk to raise awareness for organ, eye and tissue donation while benefiting The Living Legacy Foundation’s education and outreach efforts. Thanks to the support of this year’s participants, the 2013 Donate Life Family Fun Run was beyond successful, raising more than $70,000 in donations.

Donor family members, transplant recipients, hospital and funeral home partners, LLF staff and supporters of the cause were invited to attend. To add to the fun, participants were encouraged to design their own t-shirts to wear in remembrance of their loved one or donor. It was great to see so many people come out and support donation and celebrate the gift of life. We even had a local celebrity emcee the event, Michael J from WPOC.

An added element to the 2013 Fun Run was a photo booth stationed in our vendor village to capture all the great memories from the day. Every photo taken was immediately uploaded to our Instagram page. If you would like to see these photos please use hashtag #2013FamilyFunRun to relive those special moments.  In addition to the photo booth, we had tons of other activities for our guests such as the community outreach tent, donor families’ tent, a kid’s area with games and face painting, “why we walk” area and team photos. As this event grows, we hope to add more activities to celebrate and honor organ, eye and tissue donors.

This year, there was a total of 2,223 participants and 112 teams.

The largest team was the “Evangers” who had 168 people walk in remembrance of Evan Casey, an eight year old who died in 2011 and gave the gift of life.

The Family Fun Run website is still open for donations until November 15^th. Please visit http://llf.kintera.org/faf/home/default.asp?ievent=1056176 if you would like to donate to our cause. After that date, official fundraising totals will be released.

Race results can be found here http://www.charmcityrun.com/raceresults

Professional pictures will be available soon from this year’s event and a link will be accessible on our website www.thellf.org.

Without the continued support of our donor families, transplant recipients, sponsors and community partners, we could not make this special event happen. As the event grows, we strive to provide additional support to donor families and continue to develop educational programs for the public about the importance of organ, eye and tissue donation. We hope to see you all next year for the 2014 Donate Life Family Fun Run!

Celebrate National Hispanic Heritage Month: Share Your Story of Donation!

Lissette Robinson, wife and living donor
Reggie Robinson, husband and kidney recipient

The lives of nearly 4,000 Hispanics in the United States were saved last year through organ donation and transplantation.  Many thousands more restored their sight, health, and mobility through cornea or tissue transplants. While the most recent U.S. census data listed Hispanics as approximately 16 percent of the total U.S. population, 18 percent of the nearly 120,000 people who are waiting for organ transplants are Hispanic.

Lissette Estepa, originally from Puerto Rico, knows firsthand about the importance of organ donation and community education.  Living in Denver with her husband Reggie, Lissette and her family moved to Columbia, Maryland two years ago after her husband was added to the kidney transplant waitlist. “We knew we had to move since The Johns Hopkins Hospital and the University of Maryland Medical Center are two of the top-rated transplant centers in the country. We have family here so moving made sense,” says Lissette. At first, Reggie wouldn’t let Lissette take the test to find out if she was a match but Lissette knew she had to try. “I kept telling him, I know I will be a match. Watch, I’m going to be your kidney donor.” After a lot of research, Reggie finally gave the OK for Lissette to get tested and the rest fell into place. While Eliana, their 11 year old daughter, prepared to welcome family from across the region for Easter, Preston, their 9 year old son, became the Robinson’s “trainer” taking them down to local nature trails to ensure his parents were in shape for such a surgery and his training seems to have paid off. “The surgery went fine, I have no complaints” says Lissette and Reggie says his new found energy has been life-changing. “I have a different desire for life. It’s important to me to focus on my family and find a work-life balance. I find myself drawn to a more rewarding career in advocacy or a foundation now. If I had it my way, I would hit the lottery and just be a stay at home dad.”

Lissette feels a weight has been lifted. Before the surgery, she couldn’t sleep, always worried about Reggie’s health and stressed about keeping their kids busy while she cared for Reggie. “I don’t miss that,” she says, “I love seeing Reggie with new energy and being able to live a life that can just happen, with no worries.”

One of the biggest things Lissette and her family learned through their experience is how little the community knows about organ donation, especially the Hispanic community. “Donation was a taboo subject in my family and I took this opportunity to educate them about the whole process. I’m proud to say my three sisters and brother-in-law are now designated donors because of our experience and all have a new found interest in kidney and general health.”

Currently, there are nearly 120,000 men, women and children in the United States in need of a lifesaving or healing transplant, more than 20,000 of whom are of Hispanic heritage. The chances for a successful transplant increase significantly when people of the same ethnicity are matched, so it is imperative that we continue to register more donors of all ethnic backgrounds.

For more information about organ, eye and tissue donation, please visit www.thellf.org

Five Things You Should Know about the Five Stages of Grief

Five Things You Should Know about the Five Stages of Grief
By Eleanor Haley

In 1969 psychiatrist Elizabeth Kubler-Ross wrote the book On Death and Dying which introduced the world to the Five Stages of Grief – denial, anger, bargaining, depression, and acceptance. The five stages of grief is the basis for the Kubler-Ross Model, a theory based on Kubler-Ross’s experience and interviews with terminally ill patients.

The Kubler-Ross theory was originally only applied to those facing the reality of their own death. However, practitioners eventually found the constructs of this neat and tidy model fit nicely with the analysis and treatment of grieving individuals. Since its introduction, the theory has become extremely popular and can now be found in mainstream media. It has been applied to everything from divorce to global markets.

Despite the fact that the stages are sometimes refuted in academia, the Kubler-Ross Model seems to be the grief model for the masses. It is intuitive, easy to grasp, and easy to prescribe. Odds are, you have already heard what the five stages of grief are, and have wondered how this theory may apply to you.

Before you apply this grief model to your life, here are five things you should know about the Kubler-Ross Model.

1. It is just a theory:

There are many grief theories; we just happen to hear about the five stages of grief so often people tend to believe it is the gold standard.

They are not absolute truth. Like all theories, it is based on a hypothesis (an educated guess). There is some research to support the theory, but there is also research to contradict the theory as well.  In reality, other grief models may fit your experience far better than the Kubler-Ross Model.

It is unrealistic to expect your grief to fall into a neat and easy pattern, formula, or timeline, and don’t think you are abnormal or crazy if your grief doesn’t transition through the stages in an orderly fashion. It just doesn’t work that way.

2. It is not linear:

The five stages are not chronological stops on the way to healing. It’s very easy to hear the stages rattled off and think they will all happen in a particular order, when in reality some of them don’t even need to happen at all. Grief is not a one way tunnel, it’s more like a labyrinth.

The stages are just tools, based on the experiences of many other grievers, to help you understand and identify how you feel. It’s completely normal to realize weeks after a death that you began at a different start point, passed over a step, or even moved backwards.

3. Stages may repeat:

One or more of the five stages may repeat and you won’t necessarily be waving goodbye to ‘anger’ or ‘depression’ in your rearview mirror.

Again, these are tools to help identify and understand how you are feeling so don’t fret if you feel like you are taking two steps back. It’s common in grief to feel like you’re making progress one day only to get knocked on your derrière the next.

4. It is not all encompassing:

Grief is really complex. You will feel a million things after a death of someone close to you. The Kubler-Ross model only covers five different feelings. So don’t feel confused when you find yourself feeling other emotions like guilt or regret because these emotions and many others are all normal.

5. There is no end point:

Analogies like ‘grief journey’ and ‘grief path’ give us the feeling there’s some finite end point to grief. The five stages of grief leave you with a similar feeling – if I can just transition through these stages to ‘acceptance’ I will be at the end of my grief. However, you may never feel a specific end point to your grieving process. This doesn’t mean you won’t ever feel better, it means the theory will reach its end point, while your experience with grief may not.

For more information about grief support, please contact the Family Services Department at the Living Legacy Foundation of Maryland.  This team of Mental Health Professionals is available to anyone in need of grief support and can be contacted via phone @ 410-242-7000 (ask to speak to a Family Services Coordinator) or by e-mail at familyservices@thellf.org.

The Living Legacy Foundation Attends Day of Hope Events

This summer, The Living Legacy Foundation partnered with the Baltimore City Police Department and local pastors to participate in Day of Hope celebrations. The Day of Hope events were held in different parks throughout Baltimore City to focus on connecting the African American community with resources they need to live a better life. During these events, The LLF worked 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 took this opportunity to inform the community about essential donation facts. The LLF even catered our resources for these events by giving out body soap and hair shampoo.

Throughout the event, local pastors got on stage to pray and local singers and rappers

At the Day of Hope events, our
Donate Life Ambassadors engaged the community with games, giveaways and education on facts about donation.

performed inspirational sets. However, the biggest highlight was when a helicopter came down and offered kids a look inside the cockpit. There was also face painting, free lunch and fun activities to keep kids busy while parents took advantage of all the giveaways. They even offered free haircuts for kids and groceries to take home.

The goal of Day of Hope is to bring hopefulness to those less fortunate and give them the means to live a healthier and better life. People attending are always referred to as “guests of honor” and in a time when more and more people are losing faith in their leaders, the events offered a renewed sense of optimism in the community.

More than 2,600 people are waiting for life-saving organ transplants in Maryland alone; more than 1,200 are African American. It is so important the African American community understand the facts about donation so they can make an informed donation decision. By the end of September, The LLF staff will have attended four Day of Hope events and reached out to more than 5,000 people attending these events. We enjoy educating the community and look forward to this partnership in the 2014 year.

For more information on The LLF visit http://www.thellf.org

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

Cumberland, MD – Western Maryland Kidney Ride

Cumberland, MD – Western Maryland Kidney Ride
By Ben Scheide

On Saturday, September 28th, George Franklin, a volunteer with both The Living Legacy Foundation and the National Kidney Foundation – Maryland Chapter will be participating in the Western Maryland Kidney Ride. This bike ride, which takes place along the Great Allegheny Passage, assists in improving the health and well-being of individuals and families affected by kidney diseases, as well as increasing the availability of all organs for transplantation.

Riders of all levels will have the opportunity to cycle a variety of 16, 32, and 44 mile routes through the scenic mountainside of Maryland. The ride is fully supported with rest stops stocked with snacks, ice-cold drinks and encouraging volunteers. For those wanting more of a leisurely ride, the 16-mile is all downhill.

Fairfield Inn & Suites by Marriott has partnered to offer discounted rates on Friday, September 27th & Saturday, September 28th! The hotel is ideally located in downtown Cumberland, next to Canal Place, where the Ride starts and the festivities end!
There is no fee to participate in the Kidney Ride. However, the National Kidney Foundation hopes that each participant will raise $100 to be eligible for the commemorative t-shirt. There are other great incentives as more money is raised as well!
Registration begins at 9am. The cycling starts at 11am. Party & Awards will be held at 3pm! Join us for Hoagies, munchies, drinks & lots of fun!

For more information about the event and the National Kidney Foundation please visit the Western Maryland Kidney Ride website.
For more information on organ, eye and tissue donation, please visit http://www.thellf.org

2013 Donate Life Family Fun Run

2013 Donate Life Family Fun Run
by Lisa McAllister

On October 5, 2013, The Living Legacy Foundation is holding its fifth annual Donate Life Family Fun Run. This non-competitive 5K run and 1K family fun walk celebrates Maryland’s organ and tissue donors and their families while raising awareness about organ, eye and tissue donation. In 2012, we had more than 2,000 participants and this year we are expecting nearly 3,000! We hope you will please join us in celebrating the gift of life! Register today!

We already have 585 participants on 75 teams signed up and have raised more than $15,000 in donations! Proceeds will benefit The Living Legacy Foundation’s public education and outreach efforts and donor family support programs, allowing us to continue our life-saving mission.

Since its inception in 1983, The Living Legacy Foundation of Maryland, in collaboration with our Maryland hospital partners, has facilitated more than 7,000 organ transplants and life-enhancing tissue transplants. Without the profound generosity of families offering the gift of life to others while experiencing their personal loss of a friend or family member, achieving our life-saving mission would not be possible.

Currently, more than 119,000 people nationally are waiting for a life-saving organ transplant and, of those, more than 2,600 are Maryland residents who are in need of a second chance at life. The successes of The Living Legacy Foundation are significant, but pale in comparison to the contributions and the stories of our generous donors, courageous donor families, grateful recipients and their families and our dedicated hospital and community partners. The Donate Life Family Run is dedicated to those people.

Registration fees are $15 before and on September 9 for adults. After the 9th, it goes up to $20.
Child; $5 for children 17 and under before and on September 9
$10 for children 17 and under after September 9
Children under 5 are free but will not receive a T-shirt
Online Registration Ends: October 1, 2013

T-shirt and Packet Pick Up
Friday, October 4, 2013
Charm City Run
McHenry Row
1713 Whetstone Way
Baltimore, MD 21239

October 5, 2013
Registration opens at 7am
Ceremony begins at 8am
Race starts promptly at 8:30am
Camden Yards Sports Complex

Website
http://llf.kintera.org/faf/home/default.asp?ievent=1056176

Team G-Squared from the 2012 Donate Life Family Fun Run

The Myth of “Normal” Grief

The Myth of “Normal” Grief
Erin Gillard, Family Services Coordinator

The stories of the bereaved in the immediate aftermath of a loss have common threads.  A frequent concern of those who are on this journey is to worry “Is this normal?” or “Am I going crazy?” when considering different thoughts or behaviors they are experiencing as a result of their grief.  There is no set prescription for the proper way to grieve, and no set of activities that is the “right” way to move through this experience.  Though you may have heard about the more traditional idea of grief moving in stages as defined by Elizabeth Kubler-Ross, such as denial, anger, bargaining, depression, and acceptance, the reality is grief is a fluid experience.  It is more likely you will experience more than one feeling or stage at the same time and re-experience them as you move forward.

You may find your experience of grief moves between times when it feels more acute and intense and time when it is more subtle.  The acute times may have random, unpredictable triggers, such as songs playing on the radio or seeing something in a store that reminds you of your loved one.  You may think you hear your loved one’s voice or smell a scent that makes you feel like they are right around the corner.  You may find yourself picking up the phone to call your loved one or looking for them in their favorite spot in your home.

Grief is a full body experience; it is also not unusual during the more acute times to feel fatigued with difficulty in sleeping and to have changes in appetite as well.  Also, you may find episodes where you are having difficulty concentrating and feeling somewhat forgetful.  There is a wide range of experiences that fall in the range of “normal” grief, and it is important to be accepting and noncritical of yourself during this process.  You are entitled to all of your feelings and experiences.

The first year of grief is a time when we are just beginning to sit with the reality of our loss, and those acute feelings can arise with significant events and times of year such as changing of seasons, holidays, and birthdays.  Just when a major wave of grief appears to have settled, it is not uncommon to find a new unexpected trigger.  These larger waves of grief are very much part of the process, and though painful, allowing yourself to experience them as they come will help you over time.

The dance of grief has a different beat for each individual.  It’s an evolving process and there are no wrong ways for you to experience or express this complicated emotion.  Everyone wears grief differently.  Accepting your experience will likely change every day, taking it as it comes, and being gentle with yourself throughout the process can be big tools in helping you cope.

There is a difference between grief and major depression; those with a predisposition to major depression may find it aggravated by a significant loss.  Warning signs you may need additional assistance and support of the professional community include:  constant thoughts of death or suicide; continuous thoughts of being hopeless or worthless; being unable to perform daily tasks; significant weight loss/gain; slower body responses/reactions; and disconnecting yourself from all social support.  If you are experiencing any of these symptoms, please know The Living Legacy Foundation Family Service Coordinators are available to assist in connecting you with supportive services.

The Living Legacy Foundation offers on-going support for families of those who have donated organs and tissues, including donor family workshops and events to celebrate donors’ lives. The LLF’s Family Services team have diverse backgrounds and experience including social work, counseling and death and dying. The Living Legacy Foundation’s After Care Program includes bereavement literature, grief support counseling, assistance in locating support resources in your community, answering questions about donation, providing updates on recipients, assisting with donor family/recipient correspondence and providing information on how to get involved with our organization.

For more information, please contact familyservices@thellf.org

To join our mailing list, click here.

Noah’s Ride: In Memory of Noah Asid

Noah’s Ride: In Memory of Noah Asid

Hanover, Pa. – On Saturday, August 17^th, 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

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 28^th – August 4^th 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

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!

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 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