Family Spotlight

COTA Toddler Grace Moore To Celebrate Her 2nd Birthday … and Her New Heart

“Since Grace was so tiny at the time of her
transplant, we were scared and overwhelmed.
Once we connected with COTA, we were introduced
to hope after transplant. We were also introduced to many other COTA families experiencing the same things. They were holding their heads high … and so could we.”

Helen and Claude Moore
Parents of Grace

On February 13th, Grace Moore will celebrate her second birthday -- and what a celebration it will be! Even before Grace came into this world, her parents Helen and Claude Moore were told during a routine ultrasound their baby had a congenital heart defect. For the last trimester of the pregnancy, the Moores prepared for the surgeries and specialized care their newborn would require.

Throughout her first days of life, Grace’s doctors met with Helen and Claude repeatedly. Their message was clear -- in order to live, Grace needed a new heart. When tiny baby Grace was only 19 days old, she received a new heart … and a second chance at life. During these difficult days, the Moore’s friends and family members reached out to the Children’s Organ Transplant Association (COTA) to see how they could help in their Alabama hometown while Helen and Claude had temporarily relocated to Atlanta, Georgia.

The cost of Grace’s transplant alone totaled $987,000, and the Moores incurred many other costs related to the hospital stay including time away from work and lodging away from home. For the foreseeable future, Grace’s primary doctors will be in Atlanta where she will have monthly appointments -- a 700 mile roundtrip. Grace takes 10 medications daily -- and many of these will continue for her entire life -- at a cost of over $1,500 per month. But COTA has and will help with these expenses.

According to Helen, “COTA means that we were able to focus all of our attention on Grace’s needs. The financial aspects of this journey are overwhelming, but with COTA we do not have to worry about how we are going to do it all. COTA means sleeping soundly through the night and waking up fresh to start living our lives. We are discovering the world through Grace’s beautiful eyes.”

Please visit www.COTAforGraceM.com and leave the Moores your own message
of encouragement, or make a donation to help with Graces's ongoing
transplant-related expenses.

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Giving Options

One Family’s Legacy

On September 25, 1963, 10-week-old Michele Rose Rubin passed away from unknown causes. After an autopsy was performed, her cause of death was deemed 'not hereditary' and her parents, David and Judy Rubin, were encouraged to have other children. Gary was born to the Rubins on January 2, 1965.

Around his second birthday, Gary complained about a burning feeling in his eyes. David and Judy Rubin took him to many specialists. Finally, at the age of five, Gary was diagnosed with Tyrosinemia, a metabolic disorder that attacks the liver. The autopsy diagnosis for Baby Michele was incorrect. Tyrosinemia is hereditary; both Michele and Gary had it.

The Rubins heard horrific tales from doctors: "He won't live to be a teenager." "He won't grow to be over five feet tall." "He will one day develop a tumor in his liver.” Gary defied the odds and, as a teenager, dreamed about being a hockey coach or a chef. Eventually, his dream came true and Gary graduated from college as a chef.

His mother remembers asking him, upon his graduation from college, to cook a meal valued at $9,000 -- the cost of his education. According to Judy, “It was worth much more than that to us because he had survived to be a teenager and was 5'6" tall. We hoped the liver tumor would never appear.”

After graduating from college, Gary came to live with his parents in Florida where he worked as a cook. Gary left Florida at the age of 24 and returned to New York as a Garde Mangé Chef at Club 21. During an appointment at his New York hospital, he received the dreaded news … a liver tumor had appeared and the time for a liver transplant had come. Gary accepted the news because he thought that once he had his new liver, the Tyrosinemia would be history.

On July 23, 1990, the call came from the University of Pittsburgh Presbyterian Hospital
that a liver was available. "Gary called, very excited, to tell us he was on his way to
the hospital," David remembered. "We met him in Pittsburgh on July 24th after spending hundreds of dollars on airfare, which we could not afford. We had no one to help
us financially."

Gary's transplant took 13 hours and was deemed by the doctors, "very successful, except for the large and aggressive tumor."

According to Judy, "We were very low on funds. When Gary came out of the hospital on August 9th, he immediately requested three Arby's roast beef and cheese sandwiches because his Tyrosinemia prevented him from eating protein for 25 years. Because of low funds, it was difficult to buy anything for him."

Gary returned to Florida in early September. He had constant pain in his back and then broke his leg. David and Judy took him back to New York for an evaluation in January 1991. It was during this visit that Gary was diagnosed with metastatic cancer from his liver. He was flown home on an air ambulance; a flight that cost $2,700, paid in advance -- yet another expense the Rubins had difficulty paying.

Gary died a year later, on his 27th birthday, after a very courageous battle.

"I swore if I won the lottery, I would go to the ICU waiting room in Pittsburgh, listen to families, and give money to the people like us, who had nothing," Judy said. "We have more resources now and I have named COTA in my will, with a fund to be established in Gary's name that will help transplant families who have financial issues that prevent them from focusing on their child."

The Rubin family has made a generous bequest to the Gary Rubin Memorial Fund at COTA through their will. If you would like to contribute to the 'Gary Rubin Memorial Fund' or receive information about how to leave a legacy through your will or as part of an estate plan, contact Rick Lofgren at 800.366.2682 or at

Example Bequest Language
(Please feel free to change the numbers or percentages as you desire.)

1. Bequest of cash:
   "I bequeath the sum of $10,000 to the Children's Organ Transplant Association of Bloomington, Indiana."
2. Bequest of a percent of the estate:
   "I devise and bequeath 20% of the remainder and residue of property owned at my death, whether real or personal, and wherever located to the Children's Organ Transplant Association, Bloomington, Indiana."
3. Contingent Bequest:
   "If my brother John Doe survives me, I devise and bequeath 20% of the remainder and residue of property owned at my death, whether real or personal, and wherever located to John Doe. If John Doe does not survive me, then I devise and bequeath 20% of my residuary estate, whether real or personal property and wherever located to the Children's Organ Transplant Association, Bloomington, Indiana."

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Ways You Can Help

COTA’s DVD … Use It To Get Your Community Involved

Some people like to see information in writing, while others are more visual and learn best by watching a video presentation. In fact, in this modern ‘video age’ more and more people are using the Internet and their satellite television networks to seek out video/multimedia information on just about any topic. In response to today’s ‘video age’ COTA has produced a 10-minute DVD presentation that tells COTA’s story by using the words and personal experiences of COTA families and transplant professionals.

COTA wants to send you a copy of this DVD so you can address any group of potential volunteers or contributors in your community. This DVD will bring COTA’s story to life for any group presentation you wish to make.

Undoubtedly, today’s ‘video age’ has made multimedia tools a necessity for almost any presentation opportunity. COTA’s DVD highlights the organization’s roots and the services COTA provides to transplant families by featuring testimonial pieces from COTA family members and transplant professionals who see COTA’s mission played out amongst their patient population.

COTA will provide you with a copy to use in your community, for absolutely no cost, but the DVD is available only while supplies last. Please send your DVD request to and be sure to include your shipping information, as well as a short note about how you plan to use the DVD to personally spread COTA’s message of hope and miracles. You can preview the DVD by logging onto www.cota.org and following the link to COTA Video under the section entitled, “COTA.”

As always, please feel free to call COTA at 800.366.2682 if you have any questions.

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COTA News

COTA Launches New Website

The Children’s Organ Transplant Association (COTA) took special care to design an area of the new website specifically for individuals interested in supporting COTA. In the Make a Miracle area of the website visitors/supporters can:

• Learn about contributions, how to calculate deductions and how to contribute.
• Read stories from other COTA contributors.
• Learn about volunteer opportunities.
• Learn how to help raise funds and awareness.
• Learn about families/patients currently fundraising through COTA.

Look for the Make a Miracle area on the COTA home page, and then click on GIVE to learn about COTA’s myriad of giving options.

If you are interested in volunteering and want to find a COTA campaign near you or a COTA family who needs support, look for the Make a Miracle area on the COTA home page and click on Find a COTA Family.

If you are interested in learning more about COTA Miracle Makers, a group of people who want to give hope and make miracles for children and young adults who need second chance at life, go to Make a Miracle and click on Volunteer. Please email if you have any problems navigating COTA’s new website.

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COTA Fast Fact

The Children's Organ Transplant Association (COTA) provides:
Stewardship of the Funds and Non-Profit Status
The Children’s Organ Transplant Association is a national, non-profit organization. COTA is responsible for the oversight of the activities of fundraising campaigns, and serves as the trustee and steward of funds raised -- tasks taken very seriously by the COTA Board of Directors and staff. Funds donated to COTA are deductible for the donor to the fullest extent allowable by law.

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