Entries by ATF Staff

Help 3-year-old Nya find a kidney!

3-year-old Nya found a kidney!

Update: Since the below blog has been posted, Nya has found a living kidney donor! 💚 Words from her mother: "We’re so grateful! Thank you for your help in providing a space to help find potential donors. It really is incredibly important to have as many resources as possible."

My name is Deanna, and I am asking for your help to save my daughter Nya's life.

Nya is a 3 year old old twin from San Jose, CA. She loves bubbles, playing with balls, and Bubble guppies.

Nya’s life has been greatly impacted by her End Stage Renal Disease. She has been hospitalized almost half her life. She is on dialysis, over 10 medications, daily injections and is 100% tube fed. 

The most difficult thing for us about waiting for a transplant is watching Nya suffer when she’s not feeling well. Slowly watching her health decline is heartbreaking.

We are desperately seeking a living organ donor for Nya. 

The waiting list for a deceased donor kidney could take years. The longer she is on dialysis, the more risk she has for serious infections and complications. Finding a living donor would mean giving Nya a second chance at life. A life without machines to keep her alive.

Both myself and her dad are not a match, she needs a type O- or O+ kidney donor. 

Living donor transplants generally have better outcomes and can be arranged at a time convenient for both parties. No waiting and wondering while my body continues to weaken. More so, this surgery is covered for both the donor and the recipient under my health insurance!

If you have any questions or concerns about the living donation process in any aspect, please sign up for the American Transplant Foundation's Potential Living Donor Database and we can provide you with any resources you may need, including speaking with a living organ donor directly.

I would appreciate you sharing this information with anyone that you know who might be interested or a match. 

Thank you so much for your consideration!

Deanna- Nya's Mother

In memory of David Landsberg: Transplant Hero

David Landsberg of the Society for Organ Donor Awareness launched the national Donors Rock Ride in Texas on July 4, 2011, the anniversary of his kidney transplant. David cycled 50 miles in 50 states in 50 days to raise awareness for organ and tissue donation! Members of our Team Transplant joined him in 2011 as he rode through Colorado.

David passed away in July of this year. Below is a tribute from David's older sister, Leslie, about his amazing life and his advocacy for organ donation.

David’s life was riddled with health challenges. In his 20’s, he was diagnosed with Bilateral PKD (Bilateral Polycystic Kidney Disease) He took AMAZINGLY good care of himself, reached out for all kinds of unconventional treatments, everything you can imagine. By the time he went into full renal failure, the physicians at Southwestern Medical Center and Parkland had never seen a living person with kidneys as large or engorged as his were. Due to infection, he had to have one removed and then the other, and was put on the kidney transplant list.

While he was on the transplant list, David is the only person, that anyone knows of, who completed a triathlon with no kidneys and no spleen.
On July 4th, 1999 he received the kidney that would keep him alive. After the transplant, David completed an Ironman. A feat for any human, let alone someone with one kidney. Another amazing accomplishment after all he had gone through.

He then spent much of this time speaking to other dialysis patients about life on dialysis. He used the gifts and talents he had to educate the general public about the importance of organ donation. 

David would speak to anyone who would listen. He was, at that time in his life, a massage therapist, and the director at Texas Massage Institute. He was the ‘Poster Child’ for Parkland; his image was in the hallways for all to see. He gave a free chair massage in exchange for the recipient taking an organ donor card with them, just to think about it.

He needed to keep making his statement louder and louder in order to be heard. Otherwise, David was ‘just a guy’. He created what he called 50/50/50: To ride his bike 50 miles around the capital of each State, in exactly 50 days. David was interviewed on radio and television, as this was such an outrageous thing to do… no one had ever done this… and to date, no one else ever has.

David would ask “Did you know that if one was to donate every single body part from veins, to skin grafts, to earlobes and eyeballs you could impact around 75 lives?” 

So, I write this as a tribute to David. You could be giving someone else the gift of life. 

At the time of his passing, David still had a fully functioning kidney, however he had developed and ultimately died of Glioblastoma. A fatal cancerous brain tumor.

Each of us has only one life to live but many lives to give.

Rest in Peace my dear brother. You WILL be remembered.

Trivia For Life: Sports Edition 2021

Trivia For Life: Sports Edition 2021 was a huge success! We would like to thank everyone who attended and donated to help us surpass our goal, raising $9,000 for the most vulnerable transplant recipients nationwide.

Participants tested their sports knowledge through sports clips, movie clips, music, and pictures rounds-  it was a real nail biter!

We are looking forward to bringing our Trivia For Life events back in person, but have had so much fun with virtual trivia!

H.R. 5534 Passed: Lifetime Medicare Coverage of Immunosuppressant for Kidney Recipients

Kidney transplant recipients may no longer have to choose between paying for their immunosuppressant medications or paying their bills thanks to new legislation passed by US Congress.

The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2020 (H.R. 5534), passed in December 2020, will take effect on January 1st, 2023.  This bill indefinitely extends Medicare coverage of immunosuppressive drugs for kidney transplant recipients for individuals who do not have other coverage. Under current law, Medicare coverage is limited to 36 months following a transplant. Individuals under 65 years of age will have to pay a premium during their first year of coverage.

“Right now, too many patients and their families worry about whether they can afford the treatment they need to keep their transplanted kidney, today we took an important step towards alleviating that burden.”

Representative Ron Kind

The U.S. Department of Health & Human Services indicates that this legislation will lead to vast Medicare savings.

For more information on H.R. 5534, visit the Congress Website

COVID-19 Vaccine & The Transplant Community Webinar

On January 26th, the COVID-19 Transplant Community Coalition hosted the COVID-19 Vaccine & The Transplant Community Webcast. The webinar tackled the donation and transplantation community's most pressing questions from safety and efficacy in transplant recipients to distribution and misinformation.

Our panel of leading experts included representation from the CDC along with a practicing transplant surgeon and patient advocate:

  • Leilani Graham, heart transplant recipient, patient advocate, healthcare consultant
  • Brian Lima, MD, FACS, Director of Heart Transplantation Surgery, North Shore University Hospital
  • Janell Routh, MD, MHS, Co-Deputy, Implementation Unit, CDC COVID-19 Vaccine Task Force
  • Steve Adubato, PhD (Moderator), Emmy Award-winning Anchor, Author, "Lessons in Leadership"

We would like to thank all who participated!

Team Transplant in 2020

We are a community of living donors, transplant recipients, and supporters raising awareness and funds to support those going through the transplant journey.  Team Transplant […]