Month: August 2016

Major Donor

Major Donor for Kidz1stfund Receives Humanitarian Award

Jerry Haffey Sr., CEO and Founder of Ambrosia Treatment Center is the winner of the Humanitarian Award from the Harold and Carole Pump’s Cancer Foundation for his passionate and courageous work in the health field.

“Jerry became part of our network of reliable and generous friends two years ago,” expresses Dana Pump, Co-Founder the foundation. “Jerry has such a great passion for helping others and is a great friend. He has supported families who weren’t able to afford treatment, and as a result, he has given them more than just treatment. He has given them hope. Every worthy cause needs people like Jerry.”

A Passion for Ending Addiction

Jerry Haffey Sr

Jerry’s passion for compassion stems from his enduring desire to leave this world better than he found it.  Jerry began helping others working as a registered nurse in his native Philadelphia. Caring for the sick and wounded, he found reward in being connected to others on such an intimate basis.

While married with two children, Jerry made a pivotal decision that propelled him further into altruism. Illicit substances were grabbing hold of the inbound patients entering his hospital wing.  After witnessing many succumb to the exhaustive fight of addiction, he became  aware of the spreading epidemic. In fact, 23.5 million people over the age of 12 needed treatment for a drug or alcohol use, according to the National Institute on Drug Abuse (NIDA).  With a sincere desire to make a difference, Jerry relocated his family to South Florida and opened a small business to fight the crisis head-on.

Jerry’s business has become a nationwide drug and alcohol rehab refuge, awarding free scholarships to nearly 500 suffering addicts. Ambrosia Treatment Center started with 10 employees and 20 beds, but now has 5 locations in multiple states and over 225 employees.

“Jerry has assisted thousands of individuals afflicted with debilitating illnesses. He has helped bring back not only life but the quality of life for them and their families.” – Dr. Sal Raichbach, Chief Clinical Director at Ambrosia Treatment Center.

Most recently, Jerry launched an entire department dedicated to educating and supporting the loved ones affected by addiction.

In his own words, “I’ve seen the families in the waiting rooms of hospitals, stricken with grief, confusion and not knowing where to turn. The Wellness team helps better educate, support and guide these families. After all, addiction is truly a family disease, and a loved one’s healthy involvement in the process is proven to increase chances of lifelong recovery.”

A Passion for Getting Involved

Along with his business, Jerry’s network and compassion continued to grow. He knows how important it is to have support, guidance and positive influence whether battling addiction, rare diseases or even an underprivileged upbringing.

At a fundraising event, Jerry met Hall of Famer and University of Kentucky Men’s Basketball Coach, John Calipari.  Jerry began to support Coach Cal’s non-profit efforts to enrich the lives of local, disadvantaged children.

“Jerry’s influence affects everyone who he comes to know. He always finds ways to selflessly do more for others.  I’m honored to call him a friend,” Coach Cal stated.

Jimbo Fisher, the award-winning head football coach at Florida State University, has also worked closely with Jerry.  His charity works to find a cure for the rare disease Fanconi Anemia. Without support from individual donors like Jerry, afflicted families would be left with little hope.

“Words cannot explain how thankful I am for Jerry’s generosity and commitment to Kidz1stFund,” comments Jimbo.“Jerry has joined in our pursuit for a cure as if it were his own child affected. He is a phenomenal person and humanitarian, as well as a great friend, and I am forever grateful to have him on our side.”

The Pump Foundation

Jerry partnered with brothers Dana and David Pump, Founders of the Harold and Carole Pump’s Cancer Foundation, in late 2013. The foundation was named after their father, who lost his battle to cancer, and their loving mother who followed shortly after. When their father only had six months to live, the brothers used their parent’s influence of giving back to the community as the spark that started their burning desire to help that has lasted fourteen years.

The non-profit charity is one of its kind, not only creating awareness for the treatment and cure of cancer but, most significantly, assisting patients and their families with payment for services and equipment. Dana and David founded the Harold and Carole Pump Department of Radiation Oncology in California’s Northridge Hospital, providing research and treatment for people afflicted with various types of carcinoma.

“I became friends with the Pump brothers after seeing their tremendous aspirations for cancer research.” Jerry Sr. confirms. “We share the same mutual interest in helping people who need it most. It gives us satisfaction in life.”

The brothers have gained supporters from sports leaders and A-list celebrities touched by the disease, such as actor Denzel Washington and basketball Hall of Famer Bob Knight. The foundation has raised more than $7 million for the development of cancer treatments, programs, and services. Jerry Haffey Sr. became one of the most notable and honorable contributors to the Pump Foundation, sponsoring events and creating philanthropic relationships of a lifetime.

“He’s contributed his time, energy and resources to support our cause and without him, our accomplishments wouldn’t be the same. Just as he supports our endeavors, we fully back Jerry in every possible way,” Dana states.

The award will formally be presented at the foundation’s 16th annual golf tournament and dinner on August 12th, 2016.

FSU Coach Jimbo Fisher son Ethan’s fight with Fanconi anemia

 

1 in 130K children are affected by Fanconi anemia worldwide. When Ethan Fisher was diagnosed, Florida State Seminoles Football Head Coach Jimbo Fisher and Candi Fisher’s response was to “attack it like it attacks us.” They began a journey to fight the battle by founding Kidz1stFund, but none of it would be possible without the amazing individuals determined to find a cure at the University of Minnesota Masonic Children’s Hospital and the many donors and supporters that have joined the fight. We send a huge thank you to Tom D’Angelo and The Palm Beach Post for continuing to share our story. Read more about Ethan and his journey here: http://www.mypalmbeachpost.com/ethanfisher/

FSU Marching Chiefs Honor Coach Fisher’s Fight

TALLAHASSEE, Fla. – While Florida State University Head Football Coach Jimbo Fisher keeps Seminole Nation’s hopes high for another national championship this season, he continues to bring hope to another community – those living with Fanconi anemia (FA), a rare and incurable blood disorder affecting about 1 in 131,000 births annually, including his younger son, Ethan. Fisher doubled his goal by raising $3.5 million in four years through Kidz1stFund, the nonprofit he founded in 2011 to increase awareness and research funds for the deadly disease.

Kidz1stFund also champions bone marrow donor drives for supporters, including the FSU Marching Chiefs, and confirms three Chiefs have been identified as matches and will donate their stem cells to patients in need.

In true Seminole fashion, the three bone marrow donors and recent $700,000 donation that accomplished the $3.5 million financial milestone were celebrated in a big way. Not with a traditional check presentation, but with a memorable halftime performance by the Chiefs during today’s game against the University of South Florida.

The nationally acclaimed Chiefs brought fans to tears with their renditions of the theme song from Friends – “I’ll Be There For You” – and “Holding out for a Hero” while spanning the field with a “Kidz1st” formation.

“When I heard the Chiefs were planning a special show for Kidz1stFund, I was completely moved,” Fisher said. “Everything from the song selections to on-field formations brought awareness to FA and those who have personally fought for a cure, and I couldn’t be prouder or more appreciative as both FSU’s coach and the father of a child with the disease.”

The Chiefs have proven to be some of the biggest Kidz1stFund supporters. Knowing all FA patients will eventually require bone marrow transplants, more th

an 500 Chiefs have joined the Be The Match national registry in hopes of one day becoming a bone marrow donor.

The three Chiefs miraculously identified as a match include Breanna Amborn, Zachary Miller and Kyle Willard.

“As we race to find a cure for Fanconi anemia, I express my endless thanks to these three brave individuals and all who contribute to our effort in any way,” Fisher said.

Nearly 100 percent of FA patients need high-risk bone marrow transplants before adulthood, and even then, survivors have an average life expectancy of only 29 years old. Kidz1stFund continues to host bone marrow drives on a weekly basis and collect donations to fund research at th

e University of Minnesota Masonic Children’s Hospital, the largest treatment center for FA patients in the country.

To make a contribution, become a donor or learn more about the fight against Fanconi anemia, visit www.Kidz1stFund.com.

Additional media materials including fact sheets, interviews, b-roll and other visual assets may be obtained by contacting Kidz1stFund@zimmerman.com.

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One in 990 Billion Chance Two D1 Football Head Coaches Children Fighting Same Disease

TALLAHASSEE, Fla. – When reigning national champions Florida State University take on the University of Virginia, Nov. 8, the college head football coaches will be fighting for the same outcome – a cure. FSU’s Jimbo Fisher and UVA’s Mike London both have children battling Fanconi anemia (FA), a rare genetic blood disease leading to birth defects, bone marrow failure and cancer diagnoses. The odds of two head coaches having children with this disease are one in 990 billion.

The FSU Seminoles will take to the field in Tallahassee on Nov. 8 donning “I Fight Fanconi” Kidz1stFund decals on the backs of their helmets in support of nine-year-old Ethan Fisher, 18-year-old Ticynn London and all others living with FA.

Jimbo and his wife, Candi, founded and spearhead Kidz1stFund to raise awareness and treatment options for FA. In 2014 alone, Kidz1stFund raised over one million dollars to fund research at the University of Minnesota Children’s Hospital, the largest treatment center for FA patients in the country, bringing the total of donations since inception in 2011 to $2.8 million dollars.

A special $1 million check presentation will be conducted after the third quarter of the FSU versus UVA football game marking the first time a check presentation has been given in Tallahassee. Dr. Margaret MacMillan, the lead researcher and co-director of the University of Minnesota Fanconi Anemia Comprehensive Care Clinic will be there in support of this major financial accomplishment.

“Sharing the sidelines and bringing awareness to Fanconi anemia with Coach London is an honor,” said Coach Fisher. “At the end of the day, there is nothing more important than family, and Coach and I are fighting for much more than a football victory during this game.”

Ethan and Ticynn are two out of around 30 people annually affected by FA. Nearly 100 percent of patients need high-risk bone marrow transplants before adulthood, and even then, survivors have an average life expectancy of only 29 years old.

As with every home football game, Kidz1stFund will be hosting a bone marrow donor drive before kick-off on Langford Green. To date, at least five donors have been identified because of a Kidz1stFund donor drive and gone on to give their stem cells to save the lives of five patients’ fighting some type of blood cancer.

To make a contribution or learn more about the fight against Fanconi anemia, visit www.Kidz1stFund.com.

Additional media materials including fact sheets, interviews, b-roll and other visual assets may be obtained on www.Kidz1stFund.com/press. Contact Kidz1stFund@zimmerman.com for more information.

Florida State’s Jimbo Fisher, Virginia’s Mike London connected by rare disease called Fanconi anemia

November 18, 2011

By Steve Yanda

Tallahassee — In the moments after Candi Fisher got the phone call with the diagnosis, the spaghetti she had been cooking for dinner became unimportant. So she left it on the stove, hopped into her car and drove a few blocks to a path that led into the woods. Out of the car and into the dusk, she ran, barefoot, crying and screaming her husband’s name.

Jimbo Fisher, the Florida State football coach, was driving their two sons around a pond in a golf cart when he heard his wife’s voice. Seventeen days earlier, their youngest boy, 6-year-old Ethan, had been tested for a rare blood disorder, and Jimbo knew the results were due back soon.

“It’s positive?” he asked his wife.

“Yeah,” she said.

More than 4.2 million births occur each year in the United States; roughly 31 of those children are born with Fanconi anemia, a blood disease that slowly, stealthily causes bone marrow failure. There is no known cure, and doctors estimate it will be three to five years before Ethan’s body is ready for a bone marrow transplant.

On Saturday night, Jimbo Fisher will lead his Seminoles against a Virginia team coached by Mike London. Eleven years ago, doctors discovered that London’s daughter, Ticynn, had Fanconi anemia. That two families with fathers in such an exclusive profession — and in the same conference, no less — could be struck by the same unusual affliction is remarkable.

That one of them has come through the harrowing experience successfully offers hope to the other. Ticynn London celebrated her 16th birthday this month.

Ethan Fisher and his family, meantime, remain in a torturous waiting period that began on that Monday in late March.

“You feel like everything can be cured, everything can be treated,” Candi Fisher said. “As a parent, you don’t ever want to let your mind go to ‘There actually is something that could happen to my child that can’t be fixed.’ And then when you hear that’s a possibility, it’s kind of like the rug’s pulled out from under your feet, and you’re in quicksand.”

Constant worries

Regina London lived in that quicksand for more than three years, its effects evident from the outset. At first her trepidation was confined to her oldest daughter, Ticynn, who was discovered to have Fanconi anemia in January 2000.

An inherited disease, Fanconi anemia eventually leads to bone marrow failure. When that occurs, the body stops producing the number of blood cells it needs to survive. And so Regina learned to be vigilant in monitoring Ticynn’s every move, for the slightest bruise, infection or illness could be the one that overwhelmed her daughter’s blood regulatory system.

Five weeks after the diagnosis, after a search of the national bone marrow registry came up empty, Regina learned her husband, Mike, then an assistant at Boston College, was nearly a perfect match for Ticynn. The Londons were told at the time that the odds of an African American parent being a suitable bone marrow donor for his or her child is 10,000 to 1. Mike London was the one.

As exhilarating as that news was, it also doubled Regina’s fretfulness.

“We knew that Mike was going to be the donor for her, but if something happened to Mike, we didn’t know where we would be,” Regina said. “And he traveled all the time for recruiting. If he got in a car accident . . .”

Regina asked Ticynn’s doctors if, in the event Mike did get into a car wreck, they could keep him alive long enough to extract his bone marrow.

The doctors “looked at me like I was crazy, and I was like: ‘No, you don’t understand. This is her life. If something were to happen to him, then that ruins her chances,’ ” Regina said. “If he got sick or if he developed anything, then that would ruin her chances. I said it in a jokingly way, but I was serious.

“Mike said, ‘Why did you take it all the way there?’ I had to. ‘What happens if something happens to you? Where would we stand?’ ”

The doctors never answered Regina’s question, but from that moment forward, Mike said, he was hyper-cautious in his actions. Whenever he needed to shave in the coaches’ locker room, he used a new razor, lest he accidentally pick up someone else’s. When he got in his car, he put his seat belt on before turning the ignition.

Ticynn seemed to best handle the waiting for a bone marrow transplant. Other than displaying occasional lethargy, she acted like any other kid during those three years. That is Fanconi anemia’s cruelest side effect: Everything seems normal.

“The most anxious moments are always the moments when you go take her to the doctor and have them draw blood to see where her counts are,” Mike said. “You’re hoping deep, deep down inside that some miraculous miracle will occur and those numbers will shoot back up and that they would say: ‘You know what? She’s fine now.’

“But the reality of it is her numbers were at a level that said she was okay, and we decided to have the transplant when she was at a level that said she was okay, rather than [waiting for her blood counts to plummet] and then try to do it. The timing of everything worked out.”

On April 29, 2003, Mike London, who by then was an assistant at Virginia, donated his bone marrow to try to save his 7-year-old daughter’s life.

It worked. Ticynn London just finished volleyball season at St. Anne’s Belfield School in Charlottesville.

A normal 6-year-old

Had Fanconi anemia not become a facet of her everyday life, Candi Fisher would struggle to discern the difference between her youngest boy, Ethan, and every other 6-year-old she has encountered.

One Thursday morning in mid-October, Ethan got off to a rough start. Candi has learned that her son starts to wear out toward the end of the week, and on that day, Ethan had decided he didn’t want to go to school. A tantrum ensued.

Consequently, Candi arrived a few minutes late to a board meeting for the nonprofit charitable foundation she and Jimbo started in August after deciding to take their fight against the disease public. They called it the Kidz 1st Fund, and in two months it raised more than $425,000 for Fanconi anemia treatment research.

Later that afternoon, Candi picked up older son Trey, 10, and Ethan from school. When they arrived home, the boys munched on some Halloween candy, and then Ethan grabbed his baseball glove and a foam ball. He started throwing the ball from the living room at a hallway wall. He used to play organized baseball, but not anymore.

“First I’ve got to warm up,” Ethan said, “and then I just throw fast.”

He estimated he could throw that foam ball 99 mph, and the whap! whap! whap! sound the ball made against the wall seemed to provide enough confirmation.

That evening, Trey went to baseball practice while Candi and Ethan paid a visit to the Florida State marching band. The Marching Chiefs — all 460 of them — had agreed to join the national bone marrow registry, though that didn’t impress Ethan. He wanted to watch the end of Jimbo’s football practice on an adjacent field.

When Ethan finally got there, he was so intent on finding a football to toss around that he missed seeing his father as the coach came off the field. By the time he got back in Candi’s car to go pick up Trey, Ethan had moved past his disappointment. He slipped, instead, into the stream of consciousness of a perfectly fine and happy little boy.

“Three people in my class have May birthdays,” Ethan told his mother from the back seat. “How come we’ve never been to a tennis court before?”

Facing the unknown

A few days later — nearly seven months after Ethan’s disease was diagnosed — Candi Fisher picked up the phone and called, for the first time, Regina London, one of the few people who could completely empathize with her new reality.

Candi explained why she hadn’t called sooner, that in the immediate aftermath of the diagnosis she had been scared to talk to someone who had been through Fanconi anemia.

Regina explained why she hadn’t reached out to Candi. Her experience had ended positively, but she didn’t want Candi to feel as if she was telling her exactly what was going to happen. No one knows that.

Then the two mothers spoke for nearly an hour and a half. They talked about how neither Candi nor Jimbo has been tested to see if they are a bone marrow match, because the doctors are confident there will be plenty of suitable donors in the national registry when it comes time for Ethan’s transplant.

They talked about the waiting, and the disquiet it creates.

Since their experience with Ticynn, the Londons have been persistent supporters of the national bone marrow registry. Mike London, who was hired as Virginia’s head coach in December 2009, has hosted donor registry drives the past two Aprils. The family also plans to start a charitable foundation to promote bone marrow registry participation.

The success rate of bone marrow transplants for Fanconi anemia patients has increased from 30 percent to roughly 85 percent in the past 15 years, according to Margaret MacMillan, a pediatric surgeon who specializes in Fanconi anemia treatment at the University of Minnesota. But the effects of the disorder do not cease with a successful transplant.

There is no known cure. Beverly Mayhew, executive director of the Fanconi Anemia Research Fund, said those who suffer from the disorder are 500 to 700 times more likely than the general population to acquire head or neck cancers.

The waiting — for Ethan’s bone marrow system to fail, for the transplant, for everything that might occur even further down the road — can be overwhelming at times, Candi said.

With Florida State on its bye week in early October, the Fisher family traveled 40 miles northwest to Bainbridge, Ga., where Trey played in a baseball tournament. It was the first time they had returned to that ballpark since March 27, the day before they received the diagnosis of Ethan’s disease.

Sometimes, Candi said, subtle things such as returning to the Bainbridge ballpark will trigger memories of the night her life changed forever. All of a sudden she’s running barefoot and crying through the woods again, trying to find her husband and kids to relay news they never wanted to hear. And then the waiting begins anew.

“It literally can almost be like a kick in the stomach, and you have to make yourself push through it,” Candi said. “Remember that we’re doing this so we can try to prolong that day, or so that when that day comes, the treatment is better or the success rates are higher. It makes me want to push harder in this area to make that day — maybe lessen the unknown. A little bit.”

 Source: The Washington Post