Monday, December 27, 2021

Blog: Why We Love The MOMster


 Why We Love The MOMster




Introduction

I recently did a live interview with Shannon Mulroy. 


https://fb.watch/a7dQrvEfoT/

Every once in a while, you run across a great kidney transplant story that is so good, you just have to share it. But the Kidney Story you're about to read about involves not one, not two, not three but at least four kidney transplants with the possibility of more!

Shannon Mulroy has a young daughter, Julia who, at the age of 15, was living an idillac life in suburban New York, going to high school, playing soccer and lacrosse and hanging out with friends. Suddenly, her eyes and legs began to swell and Julia was not feeling well.

After extensive testing and workup at New York-Presbyterian/Columbia and a biopsy, Julia was diagnosed with FSGS, Focal Segmental Gloneruloscleesis, a disease that attacks the kidney' s filters causing permanent damage. Despite everyone's best efforts, including her remarkable family and notable physicians, Julia 's kidneys failed. She was put on Hemo dialysis as a bridge to a kidney transplant.

That when Shannon, who calls herself the MOMster, kicked into overdrive. She took steps to help her daughter find a kidney donor. Shannon was initially ruled out as a direct donor to Julia because of possible genetic mutations, someone outside of the family would have to donate. Shannon reached out on social media and to her friends with a heartbreaking letter describing her daughter's situation. A donor was found through Julia's twin brother's baseball team at St Anthony's High School in Huntington, Long Island.

A baseball mom, Lisa Calla, who is also a lawyer, donated to Julia on June 27th, 2019 at New York-Presbyterian. This so inspired Lisa's husband Guy, that he made an indirect, anonymous kidney donation. Later, Shannon herself through paired exchange, donated a kidney in return for a voucher in case Julia needs a kidney transplant again in the future. Shannon' s husband is set to do the same thing in the near future.

Since that time Shannon has become a very active kidney advocate including registering donors, speaking out and working with LiveOnNY, Nephcure, Goldfinch Bio, NPACT, CureGN Study and Kidney/Solutions with our friend Kent Bressler.

She, Lisa and Julia are also award winners!

I have been a Kidney Patient for over 41 years and an active kidney advocate for a decade. This is one of the most inspiring Kidney Stories I have ever encountered! Shannon Mulroy is a true kidney hero. I admire her so much. I think you will too.

Blindsided

Shannon is a happily married woman living in Long Island with her husband and 2 twin children. Julia, one of the twins, at the age of 15 was a happy, well-adjusted girl, who from all external appearances was healthy and normal. Suddenly, and without warning, her eyes and legs began to swell. Shannon took the normal steps to help her daughter, giving her Benadryl and taking her to the doctor. Nothing seemed to help

After extensive testing and workup at New York-Presbyterian/Columbia under the close supervision of pediatric nephrologist, Dr. Namrata Jain and Dr. Andrew Bomback, that included a kidney biopsy, Julia was diagnosed with FSGS, Focal Segmental Gloneruloscleesis, a disease than attacks the kidney's filtering system, causing permanent, irreparable damage. There is no cure for FSGS and the course of treatment only works marginally at best. The best possible result for young Julia was a kidney transplant, that would take time and is no easy feat to achieve. Her Mother has told us that she and her family were totally "blindsided" by this diagnosis

Despite everyone's best efforts, including her remarkable family and notable physicians, Julia's kidneys failed and she was put on dialysis as a bridge to a kidney transplant. She was no longer a normal high school student, staying home, missing her prom and graduation.

Mom Can't Donate to Her Daughter

Shannon is not the type to sit still when a family member is in crisis. Just the opposite, for Shannon, no stone would be unturned in an effort to save her daughter. Initially, Shannon offered to directly donate a kidney to Julia. The doctors turned her down. Shannon was ruled out as a direct donor to Julia due to possible genetic mutations, even after genetic testing. The most difficult way, the only way for young Julia to find her kidney match would have to come from a stranger, outside of the family. To say that the situation was frightening and desperate is an understatement.

The MOMster Goes to Work

A lesser person under these circumstances may have given up and let the fates take their course. Shannon Mulroy is not such a person. Her character is composed as a fighter, and Mom came out swinging. Shannon reached out on social media with a heartfelt letter describing Julia's situation. She is normally a very private person, particularly when it comes to family matters. Not this time, she would speak to anyone who would listen, trying to find a donor. Anything to save Julia.

A Donor is Miraculously Found

Shannon's efforts to reach outside of her comfort zone finally paid off. A passing conversation with another baseball mom from her son TJ's team at St. Anthony's High School led to a donor!

A Kidney Transplant for Julia

On June 27th, 2019 at New York Presbyterian, Baseball Mom, Lisa Calla, who is also a respected attorney donated to Julia Mulroy, saving her life. Julia now leads the life of a happy, independent college student because of Lisa's gift.

This so inspired Lisa's husband Guy, that he later make an indirect anonymous kidney donation.

Unfortunately, the FSGS came back an attacker the transplanted kidney. Julia has never been in full remission and continues to battle the disease

Insuring Julia's Kidney Future

As many of you know, the kidney life of a pediatric kidney transplant patient is unlike most of our kidney lives. While those of us who are diagnosed later in life hope that one kidney transplant will last us a lifetime. A pediatric kidney patient does not have this luxury. Frequently, their parents or caretakers are told up front by their nephrologists or kidney transplant surgeons that the child will need multiple kidney transplants over the course of their lives

"In general, the estimated half-life for transplanted kidneys in children is 12–15 years, therefore children with ESRD often require more than one kidney transplant in their lifetime."

Long-term Outcomes of Kidney Transplantation in Children, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6251502/#S5title

As a responsible parent, how do you ensure your child's kidney future, even after you are gone? Shannon and her husband found a way. Through paired donation (a donor swap), on August 12th, 2021, Shannon was able to donate a kidney to a complete stranger in return for a voucher for her daughter. What this means is that because of Shannon' s charitable act, if Julia should ever need another kidney transplant in her lifetime, with the voucher, she would be moved to the top of the Kidney Transplant List.

Voucher Program

https://www.kidneyregistry.org/for-centers/voucher-program/;

Family Voucher Donation 

https://www.kidneyregistry.org/for-donors/i-want-to-help-a-stranger-in-need-of-a-kidney/family-voucher-donation/;

Innovative Kidney Donor 'Voucher' System Is Saving Lives 

https://www.webmd.com/digestive-disorders/news/20210624/innovative-kidney-donor-voucher-system-is-saving-lives.

Shannon's husband will do the same thing in the near future to ensure his little girl's kidney future.

Shannon The Kidney Advocate Gives Back

Many times, once a family member's objectives are achieved on behalf of their loved ones, they quickly disappear and you never hear from them again. Shannon Mulroy is so grateful for her daughter's gift, she has decided to honor it by giving back as a tireless kidney advocate. She has become a very active kidney advocate including registering donors, speaking out and working with LiveOnNY, Nephcure, Goldfinch Bio, NPACT, CureGN Study and Kidney/Solutions with our friend Kent Bressler. Helping others to receive kidney transplant, including preemptive kidney transplants (transplant before dialysis) have joyfully become her obsession.

In Shannon's Own Words:

"Some Things I’m involved with:

Volunteer with

https://www.liveonny.org/who-we-are/ 

◦ hold events at various places to register and educate people as to the importance and need for organ donors. 

◦ Pre pandemic I would go to hospitals with one of their specialist to go on rounds with docs and nurses sharing our story

◦ Speak at universities for example to spoke to 600 resident med students sharing my story 

Volunteer with 

https://nephcure.org/aboutus/our-mission/

◦ New York State Community Leader for support and patient engagement  

◦ Host events to spread awareness for those affected by rare proteins spilling diseases

◦ Mentor and support patients and caregivers to help navigate this terrible disease 

◦ Host a monthly support group via zoom for dialysis and transplant patients and caregivers 

Patient and caregiver advisory board for

If you scroll down you can see me and Kent and this is where we met

https://www.goldfinchbio.com/kidney-focus/focal-segmental-glomerulosclerosis

◦ Guided by Amanda Grandinetti we assist By providing their doctors,scientists, and researchers real actual patient and caregiver‘s point of you. 

◦ We have helped designed the Halo Survey. this was the first comprehensive patient perspective survey of its kind in the kidney disease space. They plan to use the survey’s findings to educate researchers, clinicians and other stakeholders about kidney disease patients’ real-world experiences with treatment options.

Part of NPACT - NEPTUNE Patient Advisory Council for Therapies

https://www.neptune-study.org/

◦ NPACT is a participant advisory panel consisting of patientsand parents of children with nephrotic syndrome.  We provide feedback on research study design,study materials, and to help develop study-specific patient reported outcomes.

◦ When giving the opportunity I speak to their doctors, researchers, and scientists from a caregivers point of view. This was one of my short talks with 95 of them. 

ShannonsStory.mp4


Patient/caregiver advisory board


CureGN Study


https://curegn-org.webflow.io/about


◦ Provide insight from a caregiver‘s point of you to help with the study. 


◦ My daughter is also a participant in the study. 


Living donor coordinator for Kidney Solutions. This is a new position and I will be developing this program into something spectacular!


Kidney Solutions – A Network of Transplant Experience


◦ Work with the founder Kent Bressler to help support, mentor, and guide potential living donors 


◦ Work to try to Connect Potential donors with recipients


Here are a few things I did.


Tv interview 10/2020


https://www.youtube.com/watch?v=6Ydvww3T4pc


Radio show 9/2020


https://www.youtube.com/watch?v=R_bFfRmGFG8


Newspaper article a few days post transplant. There was an article and a video they did. Typically if a thing pops up to subscribe you just X out and open


https://www.newsday.com/long-island/suffolk/kidney-transplant-st-anthony-s-1.33497104


An article that New York Presbyterian Hospital runs throughout their entire system


https://www.nyp.org/patient-stories/the-one-bean-team"


Conclusion


Shannon Mulroy's Kidney Story is inspirational. During the Broadcast, she disclosed that at least 2 more people were moved to donate a kidney because of her story. I am very proud to call her my friend. Shannon herself says it best, "I will always give everything but up. We need to find a cure, we deserve to find a cure...we will NEVER give up." Gotta love a Mom who never gives up working for all of us kidney patients.



Blog: Why We Love The MOMster

 Why We Love The MOMster



Introduction


I recently did a live interview with Shannon Mulroy.

https://fb.watch/a7dQrvEfoT/


Every once in a while, you run across a great kidney transplant story that is so good, you just have to share it. But the Kidney Story you're about to read about involves not one, not two, not three but at least four kidney transplants with the possibility of more!


Shannon Mulroy has a young daughter, Julia who, at the age of 15, was living an idillac life in suburban New York, going to high school, playing soccer and lacrosse and hanging out with friends. Suddenly, her eyes and legs began to swell and Julia was not feeling well.


After extensive testing and workup at New York-Presbyterian/Columbia and a biopsy, Julia was diagnosed with FSGS, Focal Segmental Gloneruloscleesis, a disease that attacks the kidney' s filters causing permanent damage. Despite everyone's best efforts, including her remarkable family and notable physicians, Julia 's kidneys failed. She was put on Hemo dialysis as a bridge to a kidney transplant.


That when Shannon, who calls herself the MOMster, kicked into overdrive. She took steps to help her daughter find a kidney donor. Shannon was initially ruled out as a direct donor to Julia because of possible genetic mutations, someone outside of the family would have to donate. Shannon reached out on social media and to her friends with a heartbreaking letter describing her daughter's situation. A donor was found through Julia's twin brother's baseball team at St Anthony's High School in Huntington, Long Island.


A mom, Lisa Calla, who is also a lawyer, donated to Julia on June 27th, 2019 at New York-Presbyterian. This so inspired Lisa's husband Guy, that he made an indirect, anonymous kidney donation. Later, Shannon herself through paired exchange, donated a kidney in return for a voucher in case Julia needs a kidney transplant again in the future. Shannon' s husband is set to do the same thing in the near future.


Since that time Shannon has become a very active kidney advocate including registering donors, speaking out and working with LiveOnNY, Nephcure, Goldfinch Bio, NPACT, CureGN Study and Kidney/Solutions with our friend Kent Bressler.


She, Lisa and Julia are also award winners!


I have been a Kidney Patient for over 41 years and an active kidney advocate for a decade. This is one of the most inspiring Kidney Stories I have ever encountered! Shannon Mulroy is a true kidney hero. I admire her so much. I think you will too.


Blindsided


Shannon is a happily married woman living in Long Island with her husband and 2 twin children. Julia, one of the twins, at the age of 15 was a happy, well-adjusted girl, who from all external appearances was healthy and normal. Suddenly, and without warning, her eyes and legs began to swell. Shannon took the normal steps to help her daughter, giving her Benadryl and taking her to the doctor. Nothing seemed to help.


After extensive testing and workup at New York-Presbyterian/Columbia under the close supervision of pediatric nephrologist, Dr. Namrata Jain and Dr. Andrew Bomback, that included a kidney biopsy, Julia was diagnosed with FSGS, Focal Segmental Gloneruloscleesis, a disease than attacks the kidney's filtering system, causing permanent, irreparable damage. There is no cure for FSGS and the course of treatment only works marginally at best. The best possible result for young Julia was a kidney transplant, that would take time and is no easy feat to achieve. Her Mother has told us that she and her family were totally "blindsided" by this diagnosis.


Despite everyone's best efforts, including her remarkable family and notable physicians, Julia's kidneys failed and she was put on dialysis as a bridge to a kidney transplant. She was no longer a normal high school student, staying home, missing her prom and graduation.


Mom Can't Donate to Her Daughter


Shannon is not the type to sit still when a family member is in crisis. Just the opposite, for Shannon, no stone would be unturned in an effort to save her daughter. Initially, Shannon offered to directly donate a kidney to Julia. The doctors turned her down. Shannon was ruled out as a direct donor to Julia due to possible genetic mutations, even after genetic testing. The most difficult way, the only way for young Julia to find her kidney match would have to come from a stranger, outside of the family. To say that the situation was frightening and desperate is an understatement.


The MOMster Goes to Work


A lesser person under these circumstances may have given up and let the fates take their course. Shannon Mulroy is not such a person. Her character is composed as a fighter, and Mom came out swinging. Shannon reached out on social media with a heartfelt letter describing Julia's situation. She is normally a very private person, particularly when it comes to family matters. Not this time, she would speak to anyone who would listen, trying to find a donor. Anything to save Julia.


A Donor is Miraculously Found



Shannon's efforts to reach outside of her comfort zone finally paid off. A passing conversation with another baseball mom from her son TJ's team at St. Anthony's High School led to a donor!


A Kidney Transplant for Julia


On June 27th, 2019 at New York Presbyterian, Baseball Mom, Lisa Calla, who is also a respected attorney donated to Julia Mulroy, saving her life. Julia now leads the life of a happy, independent college student because of Lisa's gift.


This so inspired Lisa's husband Guy, that he later make an indirect anonymous kidney donation.


Unfortunately, the FSGS came back an attacker the transplanted kidney. Julia has never been in full remission and continues to battle the disease.


Insuring Julia's Kidney Future


As many of you know, the kidney life of a pediatric kidney transplant patient is unlike most of our kidney lives. While those of us who are diagnosed later in life hope that one kidney transplant will last us a lifetime. A pediatric kidney patient does not have this luxury. Frequently, their parents or caretakers are told up front by their nephrologists or kidney transplant surgeons that the child will need multiple kidney transplants over the course of their lives.


"In general, the estimated half-life for transplanted kidneys in children is 12–15 years, therefore children with ESRD often require more than one kidney transplant in their lifetime."


Long-term Outcomes of Kidney Transplantation in Children, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6251502/#S5title


As a responsible parent, how do you ensure your child's kidney future, even after you are gone? Shannon and her husband found a way. Through paired donation (a donor swap), on August 12th, 2021, Shannon was able to donate a kidney to a complete stranger in return for a voucher for her daughter. What this means is that because of Shannon' s charitable act, if Julia should ever need another kidney transplant in her lifetime, with the voucher, she would be moved to the top of the Kidney Transplant List.

Voucher Program

https://www.kidneyregistry.org/for-centers/voucher-program/;


Family Voucher Donation

https://www.kidneyregistry.org/for-donors/i-want-to-help-a-stranger-in-need-of-a-kidney/family-voucher-donation/;


Innovative Kidney Donor 'Voucher' System Is Saving Lives

https://www.webmd.com/digestive-disorders/news/20210624/innovative-kidney-donor-voucher-system-is-saving-lives.


Shannon's husband will do the same thing in the near future to ensure his little girl's kidney future.


Shannon The Kidney Advocate Gives Back


Many times, once a family member's objectives are achieved on behalf of their loved ones, they quickly disappear and you never hear from them again. Shannon Mulroy is so grateful for her daughter's gift, she has decided to honor it by giving back as a tireless kidney advocate. She has become a very active kidney advocate including registering donors, speaking out and working with LiveOnNY, Nephcure, Goldfinch Bio, NPACT, CureGN Study and Kidney/Solutions with our friend Kent Bressler. Helping others to receive kidney transplant, including preemptive kidney transplants (transplant before dialysis) have joyfully become her obsession.


In Shannon's Own Words:


"Some Things I’m involved with:


Volunteer with


 https://www.liveonny.org/who-we-are/ 


◦ hold events at various places to register and educate people as to the importance and need for organ donors. 


◦ Pre pandemic I would go to hospitals with one of their specialist to go on rounds with docs and nurses sharing our story


◦ Speak at universities for example to spoke to 600 resident med students sharing my story 


Volunteer with 


https://nephcure.org/aboutus/our-mission/


◦ New York State Community Leader for support and patient engagement  


◦ Host events to spread awareness for those affected by rare proteins spilling diseases


◦ Mentor and support patients and caregivers to help navigate this terrible disease 


◦ Host a monthly support group via zoom for dialysis and transplant patients and caregivers 


Patient and caregiver advisory board for


If you scroll down you can see me and Kent and this is where we met


https://www.goldfinchbio.com/kidney-focus/focal-segmental-glomerulosclerosis


◦ Guided by Amanda Grandinetti we assist By providing their doctors,scientists, and researchers real actual patient and caregiver‘s point of you. 


◦ We have helped designed the Halo Survey. this was the first comprehensive patient perspective survey of its kind in the kidney disease space. They plan to use the survey’s findings to educate researchers, clinicians and other stakeholders about kidney disease patients’ real-world experiences with treatment options.


Part of NPACT - NEPTUNE Patient Advisory Council for Therapies


https://www.neptune-study.org/


◦ NPACT is a participant advisory panel consisting of patientsand parents of children with nephrotic syndrome.  We provide feedback on research study design,study materials, and to help develop study-specific patient reported outcomes.


◦ When giving the opportunity I speak to their doctors, researchers, and scientists from a caregivers point of view. This was one of my short talks with 95 of them. 


         ShannonsStory.mp4


Patient/caregiver advisory board


CureGN Study


https://curegn-org.webflow.io/about


◦ Provide insight from a caregiver‘s point of you to help with the study. 


◦ My daughter is also a participant in the study. 


Living donor coordinator for Kidney Solutions. This is a new position and I will be developing this program into something spectacular!


Kidney Solutions – A Network of Transplant Experience


◦ Work with the founder Kent Bressler to help support, mentor, and guide potential living donors 


◦ Work to try to Connect Potential donors with recipients


Here are a few things I did.


Tv interview 10/2020


https://www.youtube.com/watch?v=6Ydvww3T4pc


Radio show 9/2020


https://www.youtube.com/watch?v=R_bFfRmGFG8


Newspaper article a few days post transplant. There was an article and a video they did. Typically if a thing pops up to subscribe you just X out and open


https://www.newsday.com/long-island/suffolk/kidney-transplant-st-anthony-s-1.33497104


An article that New York Presbyterian Hospital runs throughout their entire system


https://www.nyp.org/patient-stories/the-one-bean-team"


Conclusion


Shannon Mulroy's Kidney Story is inspirational. During the Broadcast, she disclosed that at least 2 more people were moved to donate a kidney because of her story. I am very proud to call her my friend. Shannon herself says it best, "I will always give everything but up. We need to find a cure, we deserve to find a cure...we will NEVER give up." Gotta love a Mom who never gives up working for all of us kidney patients.


Monday, December 13, 2021

Austin Lee Blog Final

 Blog: Austin Lee, An Extraordinary Advocate


Introduction


On Friday, November 26th, I did an interview with Austin Lee on the Urban Health Outreach Media. https://www.facebook.com/UrbanHealthOutreachmedia/videos/269613798553320/


This was a terrific, far-ranging interview with one of the more interesting kidney advocates from the DC, Maryland and Virginia (DMV) areas.

Austin Lee is a two-time kidney transplant recipient, who was born with a rare kidney disease, posterior urethral valve (PUV) and become one of the most active and influential kidney advocates in America.


He received his first kidney transplant at the age of 4 from a live donation made by his Mom in July of 1993, that lasted 14 years until late 2007. He had many challenges with kidney disease as a child.


He then did peritoneal dialysis at home until May of 2010 when by way of a paired exchange, he received a second kidney from a living donor on June 8, 2010.


After that point in time in Austin's own words, "Since I received the gift of life for the second time, I’ve made it my purpose to give back to my community. I’m now a patient care volunteer at Children’s National where I have committed over 500 hours of my time volunteering with pediatric patients. I also serve as a new Patient Family Advisory Council (PFAC) member, and I am committed to improving the overall care and experiences for other patients and families of the hospital. Children’s National honored me with the Volunteer Excellence Award in 2014, and I continue to be a voice for kidney patients in my local community and worldwide. I’ve also been recognized by the Washington Regional Transplant Community as Volunteer of the Year in 2017, and I was chosen for the Working 4 The Community Award during Black History Month in 2017 too."


Austin has recently been invited to the Kidney Health Initiative Patient and Family Partnership Council.


Currently, he is pursuing a career in Early Childhood and in the process of becoming a Child Life Specialist to help other pediatric kidney patients experiencing battles similar to his.


He is a member of the Transplant Quarter Century Club, for transplant recipients who have lived with their transplanted kidneys 25 years or more.


To conclude in Austin's own words: "I want to continue to mentor young pediatric patients on the importance of taking care of their transplanted kidneys so that they may be able to live out their life dreams and goals."


Kidney Background From Birth to Age 4


Austin was not supposed to be here. While still in the womb, during an ultrasound, they discovered a dark mass in baby Austin's bladder, an accumulation of fluid.


They told Austin's Mother that her baby suffered from Posterior Urethral Valve (PUV), or obstructive membranes that develope in the urethral (the tube that drains urine from the bladder. The valve can obstruct or block the outflow of urine the the urethral, causing the bladder, ureters and kidneys to become progressively dilated, leading to possible damage or eventual death. https://www.chop.edu/conditions-diseases/posterior-urethral-valves-puv.


As Austin's Dad was in the Service and stationed in Germany, the military physician advised Mrs Lee to abort the fetus. She refused.


While still in his Mom, they went in through her bladder and into Baby Austin to remove fluid. After Austin was born, the cut holes in his back to drain the urine from his body. He was immediately placed on peritoneal dialysis after his birth. He became the family project to help keep Austin alive. Multiple challenges and hospitalizations characterized Austin's first four years of existence.


First Kidney Transplant


Austin's Father was in the process of being transferred from the base in Germany to one in Washington, D.C. Austin's Mom had an opportunity to visit with a physician in DC concerning Austin, who immediately recommended a kidney transplant. Mom was a perfect match for Austin. Sacrifices again had to be made by Mrs Lee, who had to lose weight to qualify for her son's transplant.


At the tender age of 4 years old in 1993, Mrs Lee gave Austin the gift of life in the form of a kidney transplant. This was the first time in WDC that an Afro-American Adult had a kidney removed in one hospital, , and move to Children's National Medical Center in Washington DC. Austin also had both of his native kidneys removed at the same time. This was a painful procedure as laparoscopic surgery was not available at this time.


Although a kidney transplant is not a cute for kidney disease, and Austin would still have challenges in his life, the quality of his life was vastly improved.


Rejection


Unfortunately, after 14 years in 2007, Austin's transplanted kidney went into rejection. Austin was in high school at the time and the rejection came as a sudden and unexpected shock.


Back on Peritoneal Dialysis


Initially, Austin had to undergo emergency hemo dialysis, before returning to PD after his rejection. He remained on peritoneal dialysis for a period of 3 years. Again, there were many challenges for young Austin. During this time, Austin elected to educate himself about kidney transplants, hoping and praying for second chance at life.


Second Kidney Transplant


On June 8th of 2010, he got his second chance at a living donor kidney transplant. As a result of a paired exchange kidney swap, he was able to receive a kidney from Stella Christian, that continues to function well to this very day.


Commitment to Kidney Advocacy With Emphasis on Pediatric Kidney Patients


After his second kidney transplant, Austin committed himself to giving back to the community, including the Kidney Community with a definite emphasis on Pediatric Kidney Patients, but also to the DMV General Community as well.


He made a 500 hour commitment to Children's National, volunteering with pediatric kidney patients. He teaches pre-schoolers. He serves on the Patient Family Advisory Council (PFAC), committed to improving the overall care for patients and families of the hospital.


He is currently pursuing a career in Early Childhood to become a Child Life Specialist, helping other pediatric kidney patients to overcome obstacles similar to his experiences.


Kidney Advocacy Experiences


By far and away Austin Lee is one of the most active Kidney Advocates in the United States. Here are just a few examples:


• He recently published his story for UNOS News entitled, Austin Lee: Giving Back and Helping Others https://transplantliving.org/stories/austin-lee-giving-back-and-helping-others/;


• He is a member of the Kidney Advocacy Committee for the National Kidney Foundation and he made a video for the NKF & Donate Life America for National Minority Donor Awareness Month. https://m.facebook.com/story.php?story_fbid=4242943142427474&id=100001354900862;


• He is an Ambassador for the American Association of Kidney Patients, a Member of their Speaker's Bureau and a Peer Mentor to advise other kidney patients.https://aakp.org/center-for-patient-engagement-and-advocacy/speakers-bureau/austin-lee/;


• Acts as an Organ Donation Advocate for the Washington Regional Transplant Community. https://www.beadonor.org/;

• Has participated in the Transplant Games of America. https://www.transplantgamesofamerica.org/;


• He is a Wish Granter for the Make-A-Wish Mid-Atlantic Foundation after having a wish granted as a child himself. https://wish.org/midatlantic;


• He is a Patient Care Transplant Volunteer for Children's National Medical Center in WDC in the Heart/Transplant Unit and is currently assisting with a Christmas Gift Drive. https://childrensnational.org/;

https://www.kindnessforkidneys.org/christmas-drive/. Austin has now done over 500 hours of Service at Children’s National!;


• He has recently done a webinar for CARE DX. https://m.facebook.com/CareDx/posts;


• He is a member of the Transplant Quarter Century Club, an Organization of Organ Transplant Recipients Whose Transplanted Organ Has Survived and Functioned for Twenty-Five Years or More. http://quartercenturyclub.org/;

Community Volunteer


Austin's work in the WDC Community is also notable. He is a volunteer for Senior Dogs, Martha's Table, where 320+ bags of groceries were given away for the needy, and the DC Pantry.


Awards


Children’s National honored Austin with the Volunteer Excellence Award in 2014, as he continues to be a voice for kidney patients in my local community and worldwide. He has also been recognized by the Washington Regional Transplant Community as Volunteer of the Year in 2017, and was chosen for the Working 4 The Community Award during Black History Month in 2017.


Future Work


In the near future, Austin is doing a documentary concerning Pediatric Kidney Disease and his Transplant Journey as a Pediatric Nephrology Patient of Children's National.


Conclusion


Austin Lee is a terrific kidney advocate and a become for the DMV region. We will continue to follow his advocacy with interest.