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College Honor Student Struggles Each Day Juggling Class Work,
Long Nights of Studying and Wondering When
She Will Receive Her Life-Saving Double Lung Transplant

Bloomington, Indiana – February 12, 2007 – Carson Smith, a sophomore at Washington University in St. Louis, Missouri, tries to manage a rigorous study schedule, earn good grades, have a social life and get to all of her classes…all while doing something most of us take for granted: breathe.

During her high school years, Carson was diagnosed with Pulmonary Veno Occlusive Disease (POVD) -- the rarest form of Primary Pulmonary Hypertension.  It is a progressive disease that has no cure; the only chance of survival is a double lung transplant. 

According to Carson, “There is fibrous material growing in the veins inside my lungs and this inhibits the oxygenated blood from exiting my lungs and being pumped to the rest of my body.  Consequently, my heart works overtime trying to compensate for my ‘slacker’ lungs, but eventually my heart is going to tire and quit beating.”

A harsh reality for a 20-year-old girl from Paducah, Kentucky, who Toyota named as one of the “100 Young People Most Likely To Change the World” and who excelled at every sport she played until she no longer could breathe while doing so.

“I’ve been told that if I receive a double lung transplant my heart could go back to a normal work load, and I would be able to live and exercise,” Carson explains.  “But healthy lungs are hard to come by and I suspect that my transplant is still several years away.”

Carson’s mother, Martha Emmons, still struggles with the fact that Carson is no longer able to do what she loves – running.  “Carson was an incredible runner from a very young age.  When she was only in the sixth grade, she was running with the high school track team.”  Carson’s resume for college scholarships lists her athletic achievements as 15 years of dance, 11 years of soccer, 10 years of fast pitch softball and six years of track and field.

“I’ve had to completely change my lifestyle,” Carson says.  “I’ve had to switch from identifying myself as an athlete and centering on athletics to centering on nonphysical activities.”

According to Carson, this new lifestyle is not her choice, but it’s the hand she’s been dealt and she has decided to make the best of it.  She has a challenging course load at Washington University and she is committed to pursuing a career in medicine.  It is not an easy path to choose for a student who routinely suffers major health setbacks from viruses she contracts.  But she is determined to keep moving forward.

“We all take Carson’s challenges day-by-day,” said Carson’s mother, Emmons.  “Some days are better than others, but we all try to remind ourselves that nobody is guaranteed a tomorrow … not me, not Carson.  We try not to look too far out there.”

Carson’s family acknowledges that the Children’s Organ Transplant Association (COTA) has offered an incredible service in helping the community of Paducah raise money Carson will need for transplant-related expenses, including the anti-rejection drugs that she will take for the rest of her life, following her transplant.  “COTA has been an amazing organization.  At the time of the diagnosis, we couldn’t face talking about the transplant, much less the financial implications for our family,” said Emmons.

“Instead of the race against my opponents in the 400-meter run (which I’d rather be running), my race has turned out to be me racing against the ticking time clock of this disease,” said Carson.  “At least the race that I find myself in the midst of today has been made less daunting because of the support that I know I have behind me – my family, my friends and my COTA network of donors and volunteers.”

Carson is currently listed for a double lung transplant, but her status is inactive because medications are currently holding her condition at bay. 

“Having this disease has shown me what it means to be loved and what it means to let people help because they do truly care.  It may sound strange, but if someone gave me the chance to go back in time and magically have a normal life, I would respectfully decline the offer.  The value of knowing how to play with the cards life deals you is way too important,” said Carson. 

The Children’s Organ Transplant Association (COTA) is a national charity based in Bloomington, Indiana.  COTA is dedicated to organizing and guiding communities in raising funds for transplant-needy patients.  100% of all funds raised are used for transplant-related expenses.  COTA’s priority is to assure that no child or young adult is denied a transplant or excluded from a transplant waiting list due to lack of funds.
#  #  #
If you would like to read more about Carson Smith’s transplant journey,she has authored a first-person essay for your use.
Please contact Kim Carter Parker (kim@cota.org) if you have any questions, or need further information.


National Donor Day To Celebrate 10 Years Of Helping To Save Lives

Bloomington, Indiana -- January 15, 2007 -- The Children's Organ Transplant Association (COTA) is proud to announce that on Valentine's Day (February 14th) 2007, National Donor Day will celebrate one decade of raising awareness about the need for blood, marrow, organ and tissue donation. COTA is one of 16 national partners for this life-saving campaign that features Saturn retailers, United Auto Workers (UAW) members, and independent businesses hosting more than 100 community donor drives during the week of Valentine's Day.

"We are proud that Saturn National Donor Day has reached its milestone first decade and we could not have done it without the tremendous support of our not-for-profit partners," said Dave Quick, Team Leader for Saturn National Donor Day. "In 2007, a Saturn retailer somewhere will collect our 200,000th unit of blood since we launched this effort in 1998. This year we will also surpass the 12,000 mark in the number of potential marrow donors added to the National Marrow Donor Program Registry as a result of Saturn National Donor Day."

In 2006 alone, Saturn National Donor Day events nationwide were responsible for collecting 71,526 units of blood, for typing 1,079 marrow samples and for hosting 157 donor awareness campaigns. In its first decade of events, Saturn National Donor Day has been responsible for 24 potentially life-saving marrow matches from among the donors added to the Registry during the February 14th drives.

"More than 90,000 Americans are on transplant waiting lists and sadly, an average of 17 die each day because of the lack of organ donors," said Rick Lofgren, CFRE, President of COTA. "We are honored to work side-by-side with our Saturn and UAW partners to urge every American to commit to a life-saving donation each year on Valentine's Day. It is a gift that will last much longer than flowers and candy."

Chris Klug, Olympic snowboarder and liver transplant recipient, will serve as Saturn National Donor Day's 2007 spokesperson. Chris won an Olympic medal only 18 months after receiving a new liver; he is living proof that transplantation enables recipients to lead productive and active lives.

The Children's Organ Transplant Association (COTA) is a national charity based in Bloomington, Indiana. COTA is dedicated to organizing and guiding communities in raising funds for transplant-needy patients.

100% of all funds raised are used for transplant-related expenses.

COTA's priority is to assure that no child or young adult is denied a transplant or excluded from a transplant waiting list due to lack of funds.


PEACE Fund Contributes $15,000 to Children's Organ Transplant Association

Bloomington, Indiana – December 13, 2006 -- PEACE Fund founder Adrian Paul and the Children's Organ Transplant Association (COTA) have jointly announced a $15,000 contribution to benefit three young COTA patients whose families and communities are actively raising funds to cover un-met medical costs for their life-saving organ and stem cell transplant operations.

"The PEACE Fund's original mission guided us to reach out to COTA," said Paul, the star of the "Highlander" television and film series who founded the PEACE Fund to Protect, Educate and Aid Children Everywhere.  "I created this organization to help children living in a variety of difficult circumstances. Raising money to help fund a medical situation for a child whose family is unable to finance it certainly falls into our mission statement."

"We are truly grateful for this generous donation from Adrian Paul and the PEACE Fund's staff and donors," said COTA President Rick Lofgren.  "This wonderful gift will be used to benefit three of our patients who have urgent transplant and post-transplant care needs, and who now have a second chance at life."

This generous gift will help fund life-saving procedures for the following children: Sophia Boyer from Depoe Bay, Oregon, who is awaiting a liver transplant at Children’s Hospital and Regional Medical Center in Seattle; Nickolas Sheeder from Allen, Texas, who received a kidney and liver transplant at Mount Sinai Medical Center in New York City; and Cadence Rigden from Fort Wayne, Indiana, who received a stem cell transplant at Riley Children’s Hospital in Indianapolis.

"COTA's priority is to help ensure there is a donor for every child who needs a life-saving organ or bone marrow transplant," Lofgren explained.  "This $15,000 donation will make an incredible difference for these three children."

The PEACE Fund has been operating since December 1998 and is a 501(c)3 non-profit organization. Paul's original focus was on educating and aiding schoolchildren in the United States with hopes to eventually help children worldwide.  That dream became a reality when the PEACE Fund sprang into action to help children affected by the Tsunamis that ravaged Thailand in December 2004.  Since February 2005, PEACE Fund celebrity auctions have raised more than $150,000.

"Thanks in large part to this generous donation, Sophia, Nickolas and Cadence will have access to the health care services they require," said Lofgren.  "COTA's faithful supporters, including the PEACE Fund, have helped our organization distribute more than two million organ donor registration cards in the past five years and assist transplant patients to raise more than $43 million since 1986."

"COTA represents the ideals for which the PEACE Fund stands," added Paul.  "Our hearts and thoughts go out to the children and their families, and our thanks go to COTA for doing what they do for children who so desperately need it."

The Children’s Organ Transplant Association (COTA) is a national charity based in Bloomington, Indiana.  COTA is dedicated to organizing and guiding communities in raising funds for transplant-needy patients.  100% of all funds raised are used for transplant-related expenses.  What started as a drive to save the life of one child from Indiana two decades ago has now become a national organization that has helped more than 1,100 children and adults -- all of whom required a life-saving organ, bone marrow, cord blood or stem cell transplant.  For more information about the organization and the patients it serves, please visit www.cota.org or call 800.366.2682.  For more information about the PEACE Fund, please visit www.thepeacefund.org.


COTA Receives American Legion Child Welfare Foundation Grant

Bloomington, Indiana – November 15, 2006 – The Children’s Organ Transplant Association (COTA) is pleased to announce that it has received a $40,000 grant from The American Legion Child Welfare Foundation.  COTA will use these grant funds for a new project (“COTA Volunteer Resources: Web and Media Fundraising Tools”) that will directly benefit its patients, families and volunteers.

“This is a significant grant that will impact our ability to better serve our patients,” said Rick Lofgren, COTA President.  “In this, its 52nd year, The American Legion Child Welfare Foundation awarded over $400,000 in grants to 16 non-profit organizations.  COTA is proud to be one of these recipients.” 

The grant is co-sponsored by the American Legion Auxiliary and The Sons of The American Legion, according to Foundation Executive Bill Pease.  Created by The American Legion in 1954, the Child Welfare Foundation is a 501(c)3 corporation.  The American Legion Child Welfare Foundation’s foremost philanthropic priority is to provide non-profit organizations with a means to educate the public about the needs of children across the nation.

According to Lofgren, the new grant-funded program will have several components including organ donor education and registration efforts; new website development in the areas of on-line communications and fundraising; patient websites developed at no cost for all COTA campaigns; and a promotional campaign that will include a fully-produced DVD that each patient campaign can personalize and use to raise local media awareness of the patient’s transplant journey and financial concerns.

“While we at COTA know how to raise $25,000, $50,000 or $100,000 for a patient to meet transplant expenses, it is much more difficult to find a life-saving organ for a child who needs a second chance at life,” said Lofgren.  “I believe this grant will help us register thousands of new organ donors while helping to better tell our patients’ stories.”

The Children’s Organ Transplant Association (COTA) is a national charity based in Bloomington, Indiana.  COTA organizes and guides communities in raising funds for transplant-needy patients; 100% of all funds raised are used for transplant-related expenses.  What started as a drive to save the life of one child from Indiana in 1986 has now become a national organization that has helped more than 1,000 children and adults -- all of whom required a life-saving organ, bone marrow, cord blood or stem cell transplant.


First Annual COTA Saturday Event A Success

Bloomington, Indiana – October 16, 2006 – The Children’s Organ Transplant Association (COTA) has announced that the inaugural COTA Saturday, celebrated nationwide the weekend of September 23rd, raised approximately $100,000 for children awaiting life-saving transplants.  Awareness-raising events for COTA programs and fundraising events for COTA children were held in 12 states from Rhode Island to Texas and from Florida to Wisconsin.

“It is my pleasure to formally thank the more than 20 groups in 12 states that organized COTA Saturday events this year,” said Rick Lofgren, COTA President.  “COTA Saturday is an event designed to give local groups and individuals a platform to raise awareness of the need for organ donors and raise funds for transplant-needy children.  COTA Saturday 2006 certainly did that.”

COTA Saturday events included car washes, blood drives, donor registry activities, an Internet cookbook sale, concerts, an arts and crafts show, a car show, a motorcycle rally and much more.  Members of a Kiwanis Key Club in Texas made baked goods with members then selling the treats in their school.  In less than two hours, the students raised $450 for COTA programs.

Barbara Petula, a COTA volunteer from New York, initiated the COTA Saturday concept when she was working to raise money to help with her niece’s liver transplant.  It was her dream to create a national event where all children needing transplants could be helped.  Thus, COTA Saturday was born.

“COTA Saturday represents my goal of spreading the word about this wonderful organization’s services,” said COTA Saturday National Chair Barbara Petula.  “I am anxious to see how this event grows and expands even further during COTA Saturday 2007 and for years after that."

"2006 has been a milestone for COTA in many ways,” said Lofgren.  “We celebrated the organization’s 20th year of service to transplant families, and we witnessed the life-saving nature of our work with over 70 patients successfully transplanted.”

COTA staff and key volunteers are already strategizing about how to expand COTA Saturday during 2007.  The hope is that during September 2007, COTA-related events will be held in all 50 states. 

“We have so many patients who need funds and are waiting for organs and tissue to become available,” said Tony Paganelli, COTA’s Chairman of the Board of Directors.  “2007’s COTA Saturday events will once again focus on fundraising to assist transplant-needy children, but will also work to raise awareness about the critical organ and tissue shortage our country is facing.”

“COTA Saturday’s goal, this year and into the future, is to assure that no child is denied the opportunity for a fulfilling life due to a lack of medical coverage and funds,” Paganelli said.  “Many of our families tell us repeatedly how important COTA is to them.  COTA Saturday is our ongoing opportunity to let the nation know as well.”

COTA Saturday is made possible, in part, by grants from the Darrell R. Windle Charitable Fund and The American Legion Child Welfare Foundation.

The Children’s Organ Transplant Association (COTA) is a national charity based in Bloomington, Indiana.  COTA is dedicated to organizing and guiding communities in raising funds for transplant-needy patients.  100% of all funds raised are used for transplant-related expenses.  What started as a drive to save the life of one child from Indiana in 1986 has now become a national organization that has helped more than 1,100 children and adults -- all of whom required a life-saving organ, bone marrow, cord blood or stem cell transplant.


COTA Reports Record Number of Children Successfully Transplanted

Bloomington, Indiana – September 12, 2006 – The Children’s Organ Transplant Association (COTA) has announced that more than 70 COTA patients were successfully transplanted during the 2006 fiscal year that ended June 30th.  That brings the total number of COTA patients transplanted to more than 650 in the 20 years COTA has served transplant-needy families.

“2006 has been a milestone for COTA in many ways,” said Rick Lofgren, CFRE, COTA President and CEO.  “We celebrated the organization’s 20th year of service to transplant families; we witnessed the life-saving nature of our work; we reported that the organization is fiscally sound, and we launched our 1,000th patient fundraising campaign.”

An important benchmark for any non-profit organization is the percent of expenditures used for program-related activities.  In fiscal year 2006, COTA reported that more than 91% of COTA’s operational expenses were directed toward patient care and organ, tissue and marrow donor education program activities.

“On behalf of COTA’s Board of Directors, it is my pleasure to report that fiscal year 2006 was a record-setting year for the organization with patient contributions totaling $4.4 million,” said Anthony Paganelli, COTA Chairman of the Board of Directors. “COTA’s Board of Directors is committed to ensuring that every dollar donated for patients is used for patients’ care.”

Two decades ago, when COTA was founded, most donations were made through cash or checks.  In fiscal year 2006, COTA’s website (www.cota.org) became the organization’s newest and fastest growing method of raising funds with more than $530,000 in on-line donations being contributed electronically by nearly 4,500 donors.

Since COTA’s founding in 1986, volunteers working in communities around the nation have encouraged contributors to give more than $42 million to help COTA patients get a second chance at life.  According to Chairman Paganelli, two of COTA’s hallmarks are that patients are not charged for COTA’s services and every dollar contributed in honor, or in memory, of COTA patients is used for transplant-related expenses.

“In addition, COTA augments the funds our volunteers raise by providing a challenge grant of up to $10,000,” said Chairman Paganelli.  “This COTA program has distributed more than $1,750,000 since 2000.”

Another milestone for COTA in fiscal year 2006 was the substantial increase in partnerships with organizations to inform the public about the critical need for more organ, tissue and marrow donors.  In an effort to work toward increasing the country’s organ donation rate, COTA is a member of Donate Life America and the Indiana Donation Alliance Foundation.  During the past six years alone, COTA volunteers and staff have distributed more than 2,000,000 organ donor cards.

 “COTA was founded in 1986 when one child from Bloomington, Indiana, needed a liver transplant to survive,” said Lofgren.   “The community rallied around this child’s family and raised more than $100,000 in two months’ time.  Sadly, that little boy died before a liver became available, but their efforts were not in vain.  During fiscal year 2006, I was thrilled to announce COTA has launched its 1,000th patient fundraising campaign for another little boy from Central Indiana – Malachi Sherck.” 

What started as a drive to save the life of one child has now become a national organization that has helped more than 1,000 children and adults, all of whom required a life-saving organ, bone marrow, cord blood or stem cell transplant.

The Children’s Organ Transplant Association is a national charity based in Bloomington, Indiana.  COTA is dedicated to organizing and guiding communities in raising funds for transplant-needy patients.  100% of all funds raised are used for transplant-related expenses.


Jump-Start Your Legacy with a New Tax-Saving Opportunity
Receive the Benefits—Before Time Runs Out

If you are 70½ or older, recent federal legislation benefits YOU!

Under the Pension Protection Act of 2006, you can make a gift to a qualified charitable organization (excluding charitable trusts, donor advised funds and supporting organizations) using funds transferred from your individual retirement account—without paying taxes on your distributions. Your gift can be accomplished simply and will result in your ability to maximize the benefit of your IRA dollars. Plus, making a gift now enables you to jump-start your legacy and witness the benefits of your generosity to the Children’s Organ Transplant Association.  But remember, this opportunity only lasts until December 31, 2007.

The Benefits of the Pension Protection Act of 2006:

  • The charitable distribution counts toward minimum required distributions.
  • The transfer generates neither taxable income nor a tax deduction, so even those who do not itemize their tax returns receive the benefit.

You may transfer up to $100,000 per year directly from your IRA.

Please contact Rick Lofgren at 800.366.2682 or rick@cota.org with any questions you may have.


 



© Copyright 2006 Children’s Organ Transplant Association (COTA)