Raising Awareness
Alex realized that teens and young adults who are in a children’s hospital or in any hospital setting and fighting a cancer diagnosis face unique challenges. This group of warriors may need different types of distractions and time specifically set aside to interact with their peer group. At a time when self-image is so important, they lose their hair, gain weight from massive steroids, or cannot keep weight on due to nausea. They also tend to get very exhausted from their treatments. In fact, Alex's oncologist told us that this group tends to suffer the most during treatment for unknown reasons; perhaps hormonal changes. All of this while they are faced with deepening concerns about keeping up with the rigors of mounting schoolwork and trying to prepare for their future. Teens and young adults are also aware of statistics and the concerns about long-term effects of their treatments, and they have deeply insightful questions about their illness. They are faced with issues such as impending infertility and the knowledge that cancer is the leading cause of death by disease in teenagers and young adults.* Our fund seeks to meet the immediate needs of teens and families and honor Alex's legacy, but in addition, we are very active in the childhood, adolescent and young adult (AYA) cancer communities as well. It is disheartening to realize that only $4 out of every $100 in government research funding goes specifically toward childhood cancer research. Many cancers are specific to children, as was Alex's, and almost none of them are related to lifestyle choices. In the past twenty years, only three new drugs have been approved for childhood cancers. More years of life are lost to childhood cancers than adult cancers, and 1 in 5 children still die within 5 years of their diagnosis despite the progress that has been made. Our family will continue to work toward raising awareness and funds for cancer research through various foundations for these underrepresented groups in Alex's memory, and in honor and memory of warriors we have met along our journey...
In loving memory of Alex's friend, Hannah, and in memory of children we have gotten to know and love through their similar journeys: Kortney Rose, Baby Joey, Chase, Riley, Antonio, Emiliana Rose, Jack, and our newest angel-Charlotte Grace. God bless these angel warriors.
In honor of our amazing and strong warrior friends who are thriving and give us hope: Our friends Scarlett, Veronica, Natalie Grace, and Caeden. We love you so much!
Please click here to visit the National Cancer Institute for more information on teen and AYA cancer.
Learn more about cancer in children and adolescents here.
In loving memory of Alex's friend, Hannah, and in memory of children we have gotten to know and love through their similar journeys: Kortney Rose, Baby Joey, Chase, Riley, Antonio, Emiliana Rose, Jack, and our newest angel-Charlotte Grace. God bless these angel warriors.
In honor of our amazing and strong warrior friends who are thriving and give us hope: Our friends Scarlett, Veronica, Natalie Grace, and Caeden. We love you so much!
Please click here to visit the National Cancer Institute for more information on teen and AYA cancer.
Learn more about cancer in children and adolescents here.
Sharing Alex's Journey, to Raise Awareness and Inspire Hope..."Prioritizing children should not be a debatable question in our country, it should be a moral obligation." William Muñoz
Advocating for the RACE for Children Act. This booklet was sent to all of the members of the U.S. Congress as a thank you for passing the legislation that we so passionately advocated for. Thank you to The Kids v Cancer Team for including us in this effort! Article by William Muñoz
Public speaking engagements: Laura Muñoz Speaking engagements include the kickoff meeting for researchers at the opening of the Center for Data Driven Discover in Biomedicine at the Children’s Hospital of Philadelphia, as well as advocating for pediatric palliative care, end of life care (ELNEC), and childhood cancer awareness as a representative for the Valerie Center and Monmouth Medical Center. Amplifying Hope," published for the Children's Brain Tumor Tissue Consortium 11/16/2017, by Laura Muñoz “Sprinkled everywhere, like sugar…”That description lives with me, twists at my soul, brings me to ugly tears in the car hidden behind the mask of dark sunglasses. These innocent words were gently expressed by our 16-year-old son’s oncologist, and unveiled how insidiously his “curable” brain cancer had aggressively returned and advanced. It was the moment of the point of no return. It was the time to shakily sign tear-soaked “Do Not Resuscitate” forms. It was the afternoon I had to look into the sweet brown eyes of my cherished child and tell him that there was nothing more that the doctors could do for him. His heartbroken dad, two beloved brothers who were 15 and 20, and I brought Alex home to hospice. What we have learned about pediatric brain cancer from the time of Alex’s initial diagnosis has profoundly altered our lives. We had no notion that children’s cancers are an entirely different set of diseases than adult cancers. We were completely unaware that the National Institutes of Health only provides approximately 4 cents out of every dollar to research childhood cancer. Four cents. We were crushed to discover that brain cancer is the number one cause of death by disease in children. We were shocked to uncover that although we are given such successful survival rates for children, these numbers only reflect 5 year survival as they do in adult populations. We are talking about young children, and the average age of a childhood cancer diagnosis is 6 years old. However, new discoveries and groundbreaking methods are truly forging frontiers and deservedly raising hope. With current efforts underway to share data and facilitate collaboration among scientists, a dawning light is piercing the early morning skies. The day after Alex was told that cancer would take his life, he asked us to help others. He had no other wish or request. It is our privilege in this life to amplify his selfless voice and ask for the help that is so deeply needed. We work so that no other family should endure this agony and this loss. Love and hope should be “sprinkled everywhere, like sugar…” Not cancer. Greater Media Newspapers 5/8/2014
http://hub.our-hometown.com/news/2014-05-08/Opinion/Hope_exists_for_those_with_brain_tumors.html Hope exists for those with brain tumors LAURA MUÑOZ The air was fresh with the promise of spring when my 15-year-old son stepped out of his boat after crew practice, and we headed off for a routine MRI for daily headaches. The technician called me to the back room, and I was told that they had discovered a mass in my son’s brain. It was removed two days later. We discovered that it was a grade 4 tumor called medulloblastoma. We did not return home for almost a month. Alex received physical, occupational and speech therapy while at the hospital. After being discharged, he received six weeks of brain and spine radiation, and he was given over a year of aggressive chemotherapy. May is Brain Tumor Awareness Month. I wanted to share the story of my now-16-year-old son, Alex, to highlight the importance of awareness in the hope of motivating and inspiring action. We have spent the better part of one year in oncology units and have met so many extraordinary children and families that battle brain tumors. We have learned that their battles are fierce — but so is their determination. We have discovered that even when that determination is herculean, it may not be enough for this formidable war. Many brain tumors are inoperable because they wrap around the brain stem. One particular tumor, called DIPG, is terminal upon diagnosis. Primarily a pediatric brain tumor, DIPG is of particular interest to researchers because many in the medical community believe that a cure for DIPG will unlock a cure for all cancers. However, pediatric research only receives 4 percent of the National Institutes of Health’s budget, an infinitesimal fraction of what other cancer research receives. Alex has received the most grueling of radiation and chemotherapy regimens, and we have learned that there is much to be done in terms of discovering less severe and debilitating treatments and mitigating effects. There are amazing, new possibilities in the areas of immunotherapy and genomics. The Children’s Hospital of Philadelphia, where Alex has received the very best care and treatment, is pioneering research in this area. The promise this research holds reminds me of that fresh spring day in April when Alex stepped off his boat. He missed that spring, but I imagine a day where a malignant brain tumor diagnosis does not inspire fear and hopelessness, but rather promise and resolve. Alex’s particular tumor, though aggressive, was caught early and has a good prognosis. His last chemotherapy treatment is May 20 and will be the cause of much celebration among our family and friends. We will breathe in the sweet spring air like we never have before. But our wish is that anyone who receives a brain tumor diagnosis will know that we will not let them down, that we are fighting for research funding, and that we will be working toward a cure. The potential of a new spring day should never be forfeited or go unnoticed; it should always be ripe with expectation and filled with hope anew. Laura Muñoz Oceanport Greater Media Newspapers 5/21/2015 http://em.gmnews.com/news/2015-05-21/Letters/Sick_child_put_last_efforts_into_helping_others.html Sick child put last efforts into helping others LAURA MUÑOZ Last May, in the midst of a blossoming spring, I wrote about my son, Alex. I was looking forward to the promise of the new season with hope shining in my heart. Alex had been diagnosed with brain cancer, medulloblastoma, the year before. His prognosis was so encouraging and his disease under control. Or so we thought. On May 13, we learned his cancer had returned, this time in his spine. It would eventually spread to his brain and take his life. I wanted to share Alex’s story once again because May is Brain Tumor Awareness Month. Alex was only 16 years old when he died. He was full of hopes and dreams, like all of us. But he was also fully aware he was dying. He was never bitter. Quite the opposite — he was always so sweet and courageous. He felt that he simply had “bad luck.” Alex loved children and was most worried about the young friends he had made. When his prognosis was good, he thought about becoming a pediatrician, maybe even an oncologist. He was very bright and was always asking questions. The one thing he could not understand was why children’s cancer research only receives $4 out of every $100 spent on adult cancers. He knew that more adults get cancer, but he also knew that more years of life are lost due to children’s cancers. The average child who dies from cancer is 8 years old. He also knew that almost every childhood cancer is considered “bad luck” and has nothing to do with lifestyle choices. These facts affected him so much that he asked that all of the donations that were given to our family go directly toward childhood cancer research. Our town of Oceanport and surrounding communities rallied around us, and through the Kortney Rose Foundation and fundraisers held elsewhere, more than $170,000 has been donated to pediatric cancer research in Alex’s name. My family will be forever proud of our Alex, nicknamed “Champ.” In his final days, he was not focusing on himself, but on all of the ones he loved and all of the ones who needed help around him. This spring is not the promising haven we envisioned for our family, but our wish is that any child who receives a cancer diagnosis will smell the sweet flowers and be able to look forward to all of the springtime smiles that each and every one of them deserves. To help those with pediatric cancer, donations may be made to the Kortney Rose Foundation at www.thekortneyrosefoundation.org or to the Hannah Duffy Foundation at www.hannahduffy.org. Both foundations belong to local mothers who lost their daughters to brain cancer. A Facebook page in memory of Alex is titled “The Champ’s Corner – Alex Muñoz.” Laura Muñoz Oceanport The Link News 12/2014 http://thelinknews.net/2015/01/21/foundation’s-largest-check-to-date-honors-alex-munoz/ Foundation’s largest check to date honors Alex Munoz Oceanport — The Kortney Rose Foundation (KRF) recently presented a check in the amount of $162,000 to The Children’s Hospital of Philadelphia for the 2014 fundraising year. This is the eighth annual donation from the foundation in support of pediatric brain tumor research, and the largest to date. A group of supporters from The Korney Rose Foundation presents a $162,000 check to the Children’s Hospital of Philadelphia. The foundation has now donated a total of $910,000 in memory of the founder’s daughter Kortney, who died from a brain tumor in 2006. KRF’s 2014 donation was also made in memoriam to Alex Munoz, a 16-year-old Oceanport resident who lost his 19-month battle with a brain tumor in November. Paramount to KRF’s most successful fundraising year was the local community’s rally to support and honor Munoz who was passionate about helping other children avoid this disease through the promise of research. The foundation experienced a particularly collaborative fundraising effort with several area families raising money in memory and/or in honor of their child with a brain tumor. KRF founder Kristen Gillette and Laura Munoz. Munoz’s son, Alex, died in 2014 of a brain tumor, and helped the Foundation raise funds for researching the disease. “We especially want to thank the family and friends who donated in memory of Kortney Gillette, Alex Munoz, Hannah Duffy, Matthew Remer, and Cara Gallatro; and in honor of Tabitha Kingalahua and Dominic Vigorito. These children and their families know first-hand that research is crucial in the battle against brain tumors,” said Kristen Gillette, mother of Kortney and founder of the Kortney Rose Foundation. “The fact that pediatric brain cancer is the leading tumor cause of cancer death among children is clearly and unfortunately hitting home.” “Through the ongoing commitment of donors like The Kortney Rose Foundation, research on children’s brain tumors has now kicked into top gear,” said Tom Curran, PhD, FRS, deputy scientific director of the Children’s Hospital of Philadelphia Research. “At the Children’s Brain Tumor Tissue Consortium, we are uncovering the genes underlying these devastating diseases and creating designer therapies specific to each type of tumor.” Notable corporate sponsors in 2014 included Les Friedland & Associates (Tinton Falls), Wealth Builders Funds (Little Silver), Monmouth Park (Oceanport), The Horizon Foundation of NJ (Princeton), Vonage (Holmdel), Wells Fargo Bank (West Long Branch), Preferred Home Health Care (Eatontown), and Pauline Poyner, Heritage House Sotheby’s International Realty (Rumson). Another important sponsor is the Turning Point Restaurant organization, which annually teams up with The Kortney Rose Foundation and hosts “The Great Food for a Great Cause Fundraiser” at all Turning Point Restaurant locations. Mark your calendars for this year’s “Great” event, which will be held March 21 and 22. Kortney Rose Gillette was a nine-year old girl with a winning smile and unparalleled zest for life. She loved playing with friends and animals (stuffed or real) and enjoyed school at Wolf Hill Elementary School in Oceanport. This didn’t change even after her diagnosis of a terminal brainstem glioma. On April 27, 2006, four months after her diagnosis, Kortney lost her battle with this pediatric brain cancer. The Kortney Rose Foundation (KRF) was founded by Kortney’s mother to honor Kortney’s memory and celebrate her life. Brain tumors are the #1 solid tumor cause of death in children 20 and under with more than 3,500 children diagnosed annually. KRF was incorporated as a 501(c)(3) in 2007 to raise money for pediatric brain cancer research. More than 95 percent of every dollar donated to KRF goes directly to the life-saving research at The Children’s Hospital of Philadelphia, specifically their Large-Scale Genome Project and the new world-class Children’s Brain Tumor Tissue Consortium. NJ.Com-12/16/2014 Oceanport resident Kyle Evans donated more than 700 toys to Family & Children's Service on Friday in the name of his late friend Alex Munoz. (Photo courtesy of Family & Children's Service) Rob Spahr | NJ Advance Media for NJ.com PrintEmail By Rob Spahr | NJ Advance Media for NJ.com Email the author | Follow on Twitter on December 16, 2014 at 6:44 AM, updated December 16, 2014 at 6:45 AM LONG BRANCH – A few years ago Kyle Evans was looking for a way to give back to his community, so the Oceanport teen decided to collect toys for Family & Children's Service's annual Operation Sleighbells toy drive. Family & Children's Service is a Long Branch-based 501(c)(3) nonprofit organization that has worked for more than 100 years to help underprivileged children and their families, through programs such as foster child literacy, homelessness prevention, homecare for the aged and the infirmed, and combating childhood obesity. In the three years that followed, Evans – now an 18-year-old Criminal Justice student at Brookdale Community College – collected approximately 2,000 total toys. The "Team Alex" campaign supports 16-year-old Alex Muñoz, a Shore Regional High School student from Oceanport, who died from brain cancer in November. (Photo courtesy of Muñoz family)Rob Spahr | NJ Advance Media for NJ.com This year, however, simply spreading holiday cheer to the underprivileged was not enough for Evans. He wanted to use the toy drive effort to pay tribute to a friend who recently passed away after a 19-month battle with cancer. Alex Muñoz was an Oceanport resident and Shore Regional High School student who, by wanting to use his brain cancer diagnosis to help other kids, helped to raise more than $45,000 for pediatric brain cancer research through the Kortney Rose Foundation. In the process, Muñoz also unintentionally inspired the "Team Alex" campaignand #NoOneFightsAlone social media hashtag that united communities throughout Monmouth County, New Jersey and beyond. Muñoz died on Nov. 11 at age 16. On Friday, Evans donated more than 700 toys to Family & Children's Service his name. "It was tough to know someone my age, even younger than me, have to go deal with a burden than big in their life and try to keep positive at the same time," Evans said. "But he did keep positive, even when things were getting tough and he was dealing with his own problems, he was trying to raise money and awareness to help other people fight brain cancer." The "Team Alex" campaign supports 16-year-old Alex Muñoz, a Shore Regional High School student from Oceanport, who died from brain cancer in November. Rob Spahr | NJ Advance Media for NJ.com Evans and Muñoz were friends through their families and had known each other since they were kids. "He was nice and very down to earth," Evans said of Muñoz. "He was just a great kid who had everything going for him." So this year, Evans decided to donate the toys to Operation Sleighbells in Muñoz's name. "It's the least I could do for him," Evans said. "Everything he's done for pediatric brain cancer research, it just inspired me to do something like this in his name. It's probably what he would do." The toy drive is a very grassroots endeavor for Evans, consisting of posting fliers, putting out messages on Facebook and having people drop toys off at his own home. This year, Evans collected more than 700 toys for children ages 2 to 13, ranging from Barbie dolls to a brand new bicycle. "The response was great this year, everyone was really generous," he said. "I think it being in Alex's name helped with the toy collection." Ultimately, Evans said, the donation was not really about himself or Muñoz. "I hope the kids who get these toys get nothing but pure joy and happiness out of it," he said. "I hope that they all get to smile 'like a kid on Christmas morning.'" |
Asbury Park Press 9/5/2017
Click on link to read this article: Shore comedian lends his familiar voice to help teens with cancer Brick's Jeff Norris performs Saturday at Shore Regional H.S. Proceeds benefit the Alexander Munoz Memorial Fund, which helps fulfill a local teen's dying wish. Jeff Norris has appeared on HBO and Comedy Central. His celebrity impersonations are a regular draw at the Borgata. You might recognize his voice from Kellogg Mini-Wheats commercials. On Saturday, the comedian from Brick will perform for a special cause: The Alexander Munoz Memorial Fund. Alex was a beloved student at Shore Regional High School who died of brain cancer in 2014. The 16-year-old’s parting wish was to start something to help other hospitalized teenagers, a mission his family has carried out by raising more than $75,000 over the past three years. Shore Regional student's legacy will not die “Shows like this mean more than anything you can have on a bio,” said Norris, whose calendar is packed with charity gigs. “Don’t get me wrong, it’s an honor to work at Gotham Comedy Club and Caroline’s. But when people who need help are coming together, if putting on a show delivers that, it’s a paycheck in itself.” The benefit takes place Sept. 9 at Shore Regional, starting at 7:30 p.m. It’s run by Laughter Saves Lives, a philanthropic comedy tour born out of 9/11 by New York City firefighter and stand-up comic John Larocchia. Larocchia also is performing at the benefit, along with Steve Aleva and Stacy Kendro. “We wanted to do this in September, for Childhood Cancer Awareness Month,” said Laura Munoz, Alex’s mom. This month of awareness is crucial because pediatric cancer research receives just 4 percent of the National Cancer Institute’s budget. That figure rankles advocates like Laura Munoz. “It’s extremely disappointing when you consider how many years of life are lost for children,” she said. Alex's memorial fund is one of many charitable endeavors trying to fill that gap. Its mission is threefold: raising money for research, comforting hospitalized teens and awarding an annual $5,000 scholarship to a Shore Regional senior. The fund’s hospital beneficiaries are the Center for Data Driven Discovery in Biomedicine at Children’s Hospital of Philadelphia, K. Hovnanian Children’s Hospital in Neptune and the Valerie Fund Children’s Center Center at Monmouth Medical Center in Long Branch. “Because Alex asked us to help teens, we’ve purchased large TVs and game systems for the teen rooms in the hospitals,” Laura Munoz said. Three years into this endeavor, she said, “We are overwhelmed by the support we have received from the community.” Norris, whose impersonations of Archie and Edith Bunker, Joe Pesci, Robert DeNiro, Arnold Schwarzenegger and Jack Nicholson have earned him a loyal following, is glad to lend his voice. “I’m honored to be part of this show, for Alex’s story and his family,” he said. “I’m grateful for the gift of comedy and to be able to bring people together." Saturday’s event is presented by Laughter Saves Lives (LSL), a nonprofit organization that produces comedy entertainment for fundraising events. The organization was created to keep alive the memory of FDNY first responders lost on Sept. 11, through raising funds for charities and individuals in need. The fundraiser for the Alexander Munoz Memorial Fund was organized by East Brunswick resident Butch Seltzer, LSL national tour manager. Involved with LSL since its inception, Seltzer, who helps run the organization with LSL President John Larocchia, is a longtime friend of Laura Munoz and is a fellow East Brunswick High School graduate. IF YOU GO Norris also is performing Oct. 7 for the Molly Marie Angel Fund, which helps sick and homeless pets through Brick Town Veterinary Hospital. Tickets to the show, which begins at 6 p.m. at Manasquan Elks Lodge, range from $25-$40 and can be purchased at 732-477-9440. Tickets to Saturday’s Alexander Munoz Memorial Fund benefit are $35, but half price for first responders. For more information or tickets, contact Laura Munoz at alexmunozfund@gmail.com or visit www.laughtersaveslives.org. Tickets also will be available at the door. Staff writer Jerry Carino: jcarino@gannettnj.com. Asbury Park Press 11/5/2015 Shore Student's Legacy Will Not Die Jerry Carino Cancer curtailed the life of Alex Muñoz, who would have been a senior this fall, but much is being done in his name. As he checked out of the Children's Hospital of Philadelphia, after doctors said there was nothing more they could do for the cancer that spread to his spine, 16-year-old Alex Muñoz offered a parting thought to a social worker. "I'd like to start something to help other teenagers in the hospital," he said, according to his mom Laura Muñoz. "When the social worker sent me those notes, I just sat and cried and I knew what we had to do." As the one-year anniversary of Alex’s death approaches, his mother is carrying out those wishes with an assist from Shore Regional High School, where he would have been a senior this fall. Students are selling T-shirts that read "Like a Champ" -- a reference to Alex’s nickname -- to support a memorial fund that will supply computers and other items to teenagers at CHOP. They have dedicated Friday night’s Homecoming football game to him and to childhood cancer awareness. Most of all, they are ensuring that his tragic death spawns a lasting legacy. "The kids have rallied around this cause over the course of the last two years," Shore Regional principal Vincent DalliCardillo said. "It's a testament to how Alex has impacted our community. He was such a wonderful kid." Unselfish to the end Alex Muñoz was living life to the fullest as a freshman at Shore Regional. He belonged to Rotary International's Interact service club, volunteered at Monmouth Medical Center and competed for Navesink River Rowing. Then he started getting daily headaches, and tests revealed a brain tumor. That spring he began homebound instruction and continued to earn As in his classes. "All the teachers were incredible," Laura Muñoz said. "They would come to our home. They made sure they gave him challenges." Alex appeared to be recovering last year when a routine MRI showed the cancer had spread to his spine. On the way home from that devastating test, the family stopped at a Burger King at Alex's request. "He had problems with his balance from the (brain) surgery," Laura Muñoz said. "There was this mom on line in front of him, with a baby, and she dropped everything. He bent down to help her pick it all up. That was my Alex." The community rallied. His parents started a Facebook page, "Champ's Corner," and it took off. The students staged a school-wide “gray day,” where just about everyone wore gray -- the color of brain cancer awareness -- and commemorated it in a video. They painted the football field in his honor and dedicated a late-October game to him, but the illness worsened and he could not attend. "He never worried about himself," friend and classmate Beky Crochet said. "He always wanted to make sure we were OK through all of it." To the end, Alex submitted himself to every possible brain-tumor study in the hope that it would help other kids down the road. He died last Nov. 11, nine days shy of his 17th birthday, but his story did not end there. 'Nothing short of miraculous' Alex would have been a senior now. On the first day of school in September, the Muñoz family announced the Alexander Muñoz Memorial Scholarship -- $5,000 annually to a senior who displays his qualities and potential. The family also started the Alexander Muñoz Memorial Fund to support childhood cancer research and causes. To honor Alex's last wish, some of that money will go toward making life a little easier for the oncology patients at Children's Hospital of Philadelphia. He wanted the teens there to feel more connected and less isolated, so the goal is to supply laptop and tablets for them to share on the oncology floor. In addition, Alex's family has been deeply involved with the Kortney Rose Foundation, which supports pediatric brain tumor research at CHOP and donated $165,000 in his name. "The family is remarkable, the strength and compassion and dedication that they exhibit," DalliCardillo said. "The selflessness of what they are doing in their son's name is nothing short of miraculous." There's more. "In the month of November we're having a Teen Wish List Drive, to deliver certain items in time for the holidays," Laura Muñoz said. "The kids (in CHOP) said they wanted beanie-style knit caps, baseball caps, pajamas, new-release DVDs, video games, ear buds." Shore Regional students are pitching in by selling the "Like a Champ" T-shirts and bracelets. So far they've raised $1,000. They also dedicated the yearbook to Alex. Shore Regional painted a supporting message for Alex Munoz on its football field last year. (Photo: Courtesy of Laura Munoz) "It really was a profound event for the school," said Victoria Koontz, adviser to the Interact service club and one of Alex's favorite teachers. "To see the students band together and not worry about who's friends with whom and who is involved with this club or that sport -- to see them come together for this common cause -- has been wonderful." A lasting impact In the end, Alex left everyone a bigger gift than a laptop or scholarship fund, though those are meaningful. He gave them perspective. That will be the undercurrent of Friday's football game against Asbury Park, when Shore's stadium will be decked out in gold -- the color of childhood cancer awareness -- and the feelings will run deep. "I have 2-year-old twins, and to see the strength and grace that Laura and her family have had through this process has been inspiring and touching to me," Koontz said. "She's the kind of person, if she wanted me to tap dance at halftime, I would do it." The feeling is mutual. "Shore Regional is our family," Laura Muñoz said. "We are in tears over their generosity. It's such a beautiful thing. I wish everyone could feel a little bit of that love, without having to go through what we went through." Crochet said thoughts of Alex make her "want to cherish every day, don't take anything for granted, love your friends." What better legacy could someone leave? "I wish I could be as brave as he was, and I know a lot of the other kids at school do too," Crochet said. "The school is totally different without him, but it never would have been the same without his story because it just changed all of our lives." To contribute to the Alexander Muñoz Memorial Fund, or learn more about the Alexander Muñoz Memorial Scholarship, visit www.alexmunoz.org. Staff writer Jerry Carino: jcarino@gannettnj.com NJ.com/ The Star Ledger 10/27/2014
Team Alex: Campaign brings community's support for Oceanport teen with cancer public The "Team Alex" campaign supports 16-year-old Alex Munoz, a Shore Regional High School student from Oceanport, who is battling brain cancer. Rob Spahr | NJ Advance Media for NJ.com PrintEmail By Rob Spahr | NJ Advance Media for NJ.com Email the author | Follow on Twitter on October 27, 2014 at 9:57 AM, updated October 27, 2014 OCEANPORT – When Alex Muñoz was diagnosed with brain cancer last year, he was determined to stay as positive as possible because he did not want his family and friends to worry. However, when the prognosis for the 16-year-old Shore Regional High School student took an unfortunate turn in the last month, his community responded by showing him – and anyone who was paying attention – that he wasn't fighting the disease alone. From hundreds of signs lining roadways and messages posted in front of places like firehouses and churches, to an emotional video produced by Shore Regional students and a school-wide, color-coded show of support, the message was clear. "Team Alex" is a force to be reckoned with, and it's all because of its namesake. "Alex Muñoz is a clear example of selflessness and caring, and he is by all accounts, a great kid. He has always – and continues to, even now – put everybody else first. Making people feel at ease with what he is going through, even with all of the twists and turns he's experienced," Shore Regional Principal Vinnie DalliCardillo said. "When you see all of those signs and see how he has affected the kids around him, it is a tribute to him and his contributions to this community." *** Brain cancer is a scary diagnosis. But when a doctor told Alex Muñoz and his family that he had medulloblastoma, a malignant brain tumor, in April 2013, there was a lot to be thankful for. The "Team Alex" campaign supports 16-year-old Alex Munoz, a Shore Regional High School student from Oceanport, who is battling brain cancer. (Photo courtesy of Munoz family)Rob Spahr | NJ Advance Media for NJ.com "He had a wonderful prognosis. They were able to get the whole tumor taken out, he didn't have anything in his spinal fluid and he was going on a course of chemotherapy that has an 85-percent success rate," Alex's mother, Laura Muñoz, said. "And through it all, he was doing great." However, when Muñoz went in for a routine MRI check up, doctors could see that not only had the cancer returned, it had grown back very aggressively and was now in his spine. That is when the Munoz family learned that Alex actually had a subtype of medulloblastoma and that the prognosis was not as good as everyone had originally thought. Still, Alex Muñoz was unfazed. "He is a very brave kid. He's always been a part of this process and has known everything from beginning," Laura Muñoz said. "But he stayed very positive and didn't want the attention to be on him. He wanted the focus to be on fighting brain tumors." That is where The Kortney Rose Foundation comes into the picture. Shortly after losing her 9-year-old daughter, Kortney, to brain cancer in 2006, Oceanport resident Kristen Gillette founded a foundation in her daughter's name in hopes of raising money for pediatric brain cancer research. The "Team Alex" campaign supports 16-year-old Alex Munoz, a Shore Regional High School student from Oceanport, who is battling brain cancer. (Photo courtesy of Munoz family)Rob Spahr | NJ Advance Media for NJ.com "Pediatric brain cancer research is so under funded and we can't rely on the federal government to fund anymore. (The government) funds about 99 percent of cancer research and only about 4 percent of that gets split up among all of the pediatric cancers. So we're losing valuable researchers because they are not getting the grant money they need," Gillette said. "It's a crisis and we have to do something. Even if it means private funding, it's the only hope for these kids." When Gillette found out that another Oceanport child was battling brain cancer – and not only another family in the 3.8-square-mile borough, but one that lives only about a quarter mile from her - she reached out to the Muñoz family to ask about hosting a fundraiser to help the family with its medical expenses. But Alex Muñoz would not have it. "He wanted the focus to be on helping other kids," Gillette said. So through The Kortney Rose Foundation, Gillette helped organize a fundraiser for the cause in Alex's name and then in August, money raised from the foundation's annual Kortney's Challenge fun run and walk at Monmouth Park Racetrack were donated in Alex's name to The Children's Hospital of Philadelphia. As of last week, approximately $45,000 has been donated in Alex's name for pediatric brain cancer research, Laura Muñoz said. *** In many ways, Alex Muñoz is a unique kid. Before getting sick, he spent his time participating in competitive crew races, earning accomplishments such as being named to the All-Shore band and volunteering at Monmouth Medical Center. He is also an explorer and adventurer at heart, whose dream was to go on an African safari. And when that trip was not possible due to his condition, he used his wish through the Make-A-Wish Foundation to go on a Caribbean cruise with his family. "He was just like: 'OK, we'll do something else,'" Laura Muñoz said. "And the whole trip was beautiful." In other ways, Alex Muñoz is a typical kid. "Because Alex hadn't been in school for such a long time, there was kind of a disconnect there and he was concerned that he had been forgotten," Gillette said. In late September, doctors gave Munoz and his family more bad news. "The latest scan showed that the disease had spread aggressively and they didn't give us much to hold on to at that point," Laura Munoz said. When Gillette heard the latest, she wanted to do something to show Alex that he had not been forgotten. So she set out to get signs, banners, t-shirts and wristbands made – with the wording "Team Alex – No One Fights Alone" - as a small gesture to show Alex that people did in fact remember him. What happened next was extraordinary. The signs and messages began popping up everywhere. Local leaders and residents took photos with the signs and posted them online to show their support. Classmates started the hashtags #StayStrongAlex and #NoOneFightsAlone to build the movement on social media. Families incorporated the messages and signs into their Halloween displays. A group of Penn State students sent hand-written messages of support. The students and staff at Shore Regional High School all wore gray for a day as a showing of solidarity for Alex. Members of the school's Conquer Cancer Club, which has been closely involved with the Team Alex campaign and The Kortney Rose Foundation, produced a video so Alex could see how much he was loved. And Stephen Colbert even invited Alex to attend a taping of his show, "The Colbert Report," where he also took time to meet with Alex and his family. "I know how Alex feels about the attention being on him, but this isn't about raising money or helping anyone else," Gillette said. "This is all about Alex and letting him know he is not alone." Oceanport Mayor Michael Mahon said that seeing the Team Alex signs lining the borough's Main Street was a symbol of both the kind of community Alex lives in and how much he means to it. "We've unfortunately seen this community rally behind things before, such as The Kortney Rose Foundation and Monmouth Medical Center's 'Roll Out The Ribbons' campaign. And you could see it in the response to Hurricane Sandy and the recent death of Police Officer Pat Gornik," Mahon said. "It's just something that this community, at the snap of the finger, finds it in its heart to embrace something and rally behind it." When the news of Muñoz's latest prognosis made it to Shore Regional, staff and faculty met to discuss the situation and to make sure that the students had all of the resources possible available to help them cope with it. But DalliCardillo said the Team Alex campaign has been more than a coping mechanism. "There is absolutely an overwhelming energy here," he said. "I think they know that they may not be able to affect his recovery. But there is such a sense of community and caring that exists now, that it's had to help these kids. Because instead of suffering for their friend in silence, there is a strength here now." Alex was transitioned to in-home hospice care last week, but his mother said this recent outpouring of support has brought him joy in a very difficult time. "He is so incredibly moved," she said. "He is so amazed and overwhelmed. It's just given him such great, great joy." But Alex Muñoz is not the only person who has benefited from this showing of support, which by now has spread to several other towns. It has also brought at least some measure of happiness to his mother, father and two brothers, who have been unwaveringly by his side throughout his battle with cancer. "This has been such a gift... a treasure," Laura Muñoz said. "God bless their hearts, their gifts of friendship and love. We are just so amazed by all of the graciousness and support. They saw someone they knew who was suffering and are going out of their way to stand by him. We are truly blessed to live in such a magnificent community." --For more information about Alex Muñoz check out the "Champ's Corner" page on Facebook and to learn more about The Kortney Rose Foundation, click here. Rob Spahr may be reached at rspahr@njadvancemedia.com. Follow him on Twitter @TheRobSpahr. Find NJ.com on Facebook. The Daily Mail -UK 11/12/2014 http://www.dailymail.co.uk/news/article-2831708/Teen-raised-45-000-pediatric-cancer-inspired-national-awareness-campaign-dies-19-month-battle.html Teen who raised $45,000 for pediatric cancer and inspired a national awareness campaign dies after 19 month battle
PUBLISHED: 12:20 EST, 12 November 2014 | UPDATED: 13:52 EST, 12 November 201A 16-year-old cancer sufferer who raised more than $45,000 for pediatric cancer and inspired a nationwide awareness campaign has passed away. Alex Muñoz, who inspired the 'Team Alex' campaign, died on Wednesday afternoon 'after a courageous 19 month battle with brain and spinal cancer,' his family wrote on his Facebook page. 'He was 16 years old and the light of our lives,' they wrote. 'He will be forever missed and forever loved.' Muñoz, from Oceanport, New Jersey, was diagnosed with medulloblastoma, a malignant brain tumor, in April 2013 and underwent radiation, chemotherapy and brain surgery. Loss: Alex Muñoz, pictured front right with Stephen Colbert and his parents, has passed away after a 19 month battle with brain and spinal cancer, aged just 16. He had inspired the campaign 'Team Alex' But when he returned for a routine MRI check up, doctors found that the cancer had returned, far more aggressively, in his spine. 'But he stayed very positive and didn't want the attention to be on him,' his mother Laura told NJ Advance Media in an interview last month. 'He wanted the focus to be on fighting brain tumors.' The Kortney Rose Foundation, which was set up by the parents of nine-year-old Kortney after she died from brain cancer in 2006, heard of Alex and got in touch to hold a fundraiser for him. But he wouldn't allow them to focus their fundraising on paying for his medical expenses and instead asked to join them to raise money for pediatric cancer research. By last month, approximately $45,000 had been donated in Alex's name for pediatric brain cancer research, his mother said. When the Muñoz family learned that his condition was much worse than they thought, Kortney Rose's mother Kristen Gillette designed t-shirts and wristbands reading: Team Alex - No One Fights Alone.' He didn't want the attention to be on him. He wanted it to be on fighting brain tumors Alex's mother Laura Within days, the campaign of support unexpectedly took off in the community, as local leaders, residents and university students shared photos of their 'Team Alex' signs. His classmates started the hashtags #StayStrongAlex and #NoOneFightsAlone on social media, while people from across the country wrote him messages of support. Even Stephen Colbert invited Alex and his family to attend a taping of his show 'The Colbert Report', where he posed with the star. 'Alex Muñoz is a clear example of selflessness and caring, and he is by all accounts, a great kid,' his principal at Shore Regional Vinnie DalliCardillo said last month. 'When you see all of those signs and see how he has affected the kids around him, it is a tribute to him and his contributions to this community.' He was moved to in-home hospice care in October, but he never stopped appreciating the messages. 'He is so incredibly moved,' Laura Muñoz said. 'He is so amazed and overwhelmed. It's just given him such great, great joy.' After news of his death, friends paid tribute to the teenager on his Facebook page. 'I may have been his kindergarten teacher, but Alex taught me so much more about character and strength,' Carole Bisti Valentino wrote. 'He led by example, with hope, kindness, love for his family and that infectious smile! He is and will always be my hero.' |
