© 2018 The Allie & Friends Foundation

Allie & Friends Foundation, Inc. (“A&FF”) is an Indiana nonprofit corporation operating through a fiscal sponsorship with Players’ Philanthropy Fund, Inc. (Federal Tax ID: 27-6601178), a Maryland charitable trust with federal tax-exempt status as a public charity under Section 501(c)(3) of the Internal Revenue Code.  Contributions to A&FF are tax-deductible to the fullest extent of the law.

ABOUT US

OUR MISSION:  Tackling Pediatric Cancer

THE ALLIE & FRIENDS FOUNDATION is a nonprofit organization that creates a positive atmosphere for generating charitable contributions to fund the battle against pediatric cancer. A&FF is committed to helping find a cure for this devastating disease through research, and supporting families in need through education.  A&FF also desires to utilize it's platform to increase awareness and advocate for those in need. A&FF will fund research grants and clinical trials, and educate the public about a disease dramatically lacking in funding.  Less than 5% of the Federal Government’s total funding for cancer research is dedicated to childhood cancers each year, yet kids make up 20% of the population.  Childhood cancer is the leading cause of death by disease in the U.S., and it kills more children per year than cystic fibrosis, muscular dystrophy, asthma, and AIDS combined.  A&FF is dedicated to finding a cure for the kids!

OUR STORY

 

The Allie & Friends Golf Classic was founded in 2005 by Scott and Kristin Jewson when their dear friends, Brian and Keri Neff, received devastating news about their two year old daughter's health.  Allie had stage IV neuroblastoma, a pediatric cancer.

 

Over the next two years, Allie courageously battled cancer. She went through chemotherapy, stem cell transplant, isolation, radiation and surgery.  In the end, the cruel disease claimed her life two months before her fourth birthday.

 

Allie is the inspiration behind the golf outing, and the foundation that was created out of it. Today, the Allie & Friends Foundation is more than 500 participants strong in the Allie & Friends Golf Classic, and is hosting it's 3rd Annual Cheers For Charity fundraiser.  Over $1.4 million has been raised over the past 13 years to help beat this devastating disease.

 

The friends and families of the Allie & Friends Foundation have joined together and are determined to raise money and awareness for pediatric cancer research.  Our children are in a desperate situation, with little guarantee that they will survive this disease.  Cancer treatments are scary, painful, long, and full of tears and prayers.  Imagine going through all of these treatments before you can even spell your name.  Help us find a cure for these children!

 

We fight the fight for Allie and her friends.  We hope you hear our pleas for help and join us in the fight against pediatric cancer.

OUR TEAM

 

BOARD OF DIRECTORS

Ryan Diem - Board Member

14 years ago, I was invited to participate in the first "Allie & Friends" golf outing by CNCF founder Pat Tallungan. My wife, Julie, and I were incredibly impressed by the professionalism of the event and touched by the heartbreaking stories of the families affected by pediatric cancer. During my time with the Colts, we were encouraged by our coach, Tony Dungy, to be active in the community and to utilize our platform for good. We felt like this was certainly a cause worth elevating!  

 

The original organizers of the event, Scott and Kristin Jewson, have dedicated countless hours to the success of the outing and have done an amazing job coordinating over 500 people for a worthwhile cause. One of the most personally rewarding aspects of this event is that many of our family and friends have become involved over the years and have donated their time to help the cause. Julie and I hope to continue to raise awareness for this devastating disease and work towards a cure.

As the event grew, and the idea of additional events came into the picture, we decided to evolve from a free standing event into a full blown foundation. We are honored to have our names associated with the Allie and Friends Foundation and everything it stands for. Our mission is the same as the foundation's mission: To raise money for a great cause in a positive environment! We are so thankful to have so many family and friends helping support our mission, and helping us find a cure for this awful disease that affects so many children across the world.  

 

Scott Jewson - Board Member

scott@allieandfriends.org  The idea of Allie & Friends started in 2004 when lifelong friends of ours received news that their young daughter was diagnosed with Stage IV Neuroblastoma and her odds of survival were less than 40%. Out of nowhere, this beautiful little girl was fighting for her life to a disease we had never heard of. We felt helpless with our friends 400 miles away; we could not help with child care of their other two children, meals, or even shoulders to cry on. What we could do is raise awareness and money for this terrible disease, in honor of Allie Neff.

 

Eleven years later, we are amazed at what this golf outing has become. The generosity and support of so many people is incredible. So many sponsors, golfers, and volunteers have been with us since our first year, and their eagerness to sign back up each year and donate more of their time and resources, simply blows us away. Allie & Friends would not be what it is today without all of the wonderful people joining in and doing what they can do to help out and make a difference.

 

Sadly, Allie lost her courageous battle in 2006. Allie & Friends continues on in her memory and helps us continue to fight for all the other children and families living with cancer. The money we raise goes to research that hopefully someday finds a cure and no other families have to lose their child to neuroblastoma. That is our hope and mission for Allie & Friends and why we do what we can.

 

Kevin Haracz - Board Member

kharacz@pga.com

LEADERSHIP TEAM

Julie Diem

Amie Haracz

Kristin Jewson

OUR OPERATIONS

The Allie Team is passionate about positive fundraising for a severely underfunded cause.  We focus our energy on trying to find a cure and educating families about their child's future care and cure.  It is this reason that we have chosen to partner with the Player's Philanthropy Fund (PPF) to help operate our backend accounting, bookkeeping, compliance and tax filing functions.  We are great at raising the money from our generous supporters, and they are great at running the backend of our operation - sounds like a perfect gameplan to us! 

The partnership is called a "fiscal sponsorship" and can be defined as the practice of non-profit organizations offering their legal and tax-exempt status to groups engaged in activities related to the organization's missions.

Fiscal sponsorship can enable projects to share a common administrative platform with a larger organization, thus increasing efficiency. In addition to legal status, sponsors can provide publicity, fundraising assistance, and training services, sparing projects the necessity of developing these resources and allowing them to focus on programmatic activities.

For more information about the Player's Philanthropy Fund, please visit www.playersphilanthropyfund.org

The Allie & Friends Foundation, Inc. is an approved subordinate organization/fund held within the Players’ Philanthropy Fund, a Maryland nonprofit corporation and charitable platform that has received recognition of federal tax- exempt status as a public charity under Section 501(c)(3) of the Internal Revenue Code (Tax ID: 27-6601178).  Contributions to the Allie & Friends Foundation are tax-deductible to the fullest extent of the law.

FACTS ABOUT PEDIATRIC CANCER

  • Childhood cancer is the number one disease killer in children.

  • Cancer is the leading cause of death by disease in children and adolescents in the United States. (Source: National Cancer Institute)

  • Each year in the United States, approximately 13,500 children and adolescents 18 and under are diagnosed with cancer, that’s more than a classroom of kids a day. (Sources: Center for Disease Control and Children’s Oncology Group)

  • One out of every 285 kids in America are diagnosed with cancer before their 20th birthday.  About 16,000 per year.

  • More than 40,000 children undergo treatment for cancer each year. (Source: CureSearch)

  • Approximately 20 percent of all children with cancer will die for their disease, a secondary cancer, or complications from treatment. (National Cancer Institute)

  • The causes of most pediatric cancers remain a mystery and cannot be prevented. (American Cancer Society)

  • Childhood cancer does not discriminate, sparing no ethnic group, socio-economic class or geographic region. (Source: Centers for Disease Control data)

  • About one in 500 young adults is a childhood cancer survivor. Nearly 2/3 of the survivors later experience significant and chronic medical problems or develop secondary cancers as adults that result from the treatment of their original cancer. (Source: UCSF Benioff Children’s Hospital)

  • Incidence of invasive pediatric cancers is up 29% in the past 20 years. (Source: National Cancer Institute)

  • In the last 20 years, the U.S. Food and Drug Administration (FDA) has approved only two pediatric cancer drugs—Clolar (clofarabine) and Erwinaze (asparaginase Erwinia chrysanthemi)—that were initially studied in children. Other drugs for children’s cancers were first studied in or approved for adults with cancer. (American Association for Cancer Research)

  • The average age of death for a child with cancer is 8, causing a childhood cancer victim to lose 69 years of expected life years; a significant loss of productivity to society. (Source: Kids V. Cancer)

  • Childhood cancer survivors are at significant risk for secondary cancers later in life. (Source: National Cancer Institute)

  • Cancer treatments can affect a child’s growth, fertility, and endocrine system. Child survivors may be permanently immunologically suppressed. (Source: National Cancer Institute)

  • Radiation to a child’s brain can significantly damage cognitive function, or if radiation is given at a very young age, limiting the ability to read, do basic math, tell time or even talk. (Source: National Cancer Institute)

  • Physical and neurocognitive disabilities resulting from treatment may prevent childhood cancer survivors from fully participating in school, social activities and eventually work, which can cause depression and feelings of isolation. (Source: National Cancer Institute)

  • Less than 5% of the Federal Government’s total funding for cancer research is dedicated to childhood cancers each year, yet kids make up 20% of the population.

  • Every year, and estimated 263,000 new cases of cancer affect children under the age of 20 worldwide.  That’s 720 new kids affected each day.

  • Every day, approximately 250 kids around the world die from cancer.  91,250 children lose their life to cancer every year.

  • Funding from large cancer organizations doesn’t help too much; less than 1% of the American Cancer Society total donations is directed toward childhood cancer research.

  • About 900 adult cancer drugs are in the drug development pipeline, and almost none for children’s cancers.

  • Children in the richest, most powerful nation with the highest standard of living the world have to rely on grass roots efforts like this to raise money to stop the #1 killer of our children.

  • There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.

  • Nationally, childhood cancer is 20x more prevalent than pediatric AIDS.

  • Pediatric AIDS receives 4x the funding that childhood cancer receives.

  • In one month there are 2x as many deaths from childhood cancer as pediatric AIDS for the entire year.

  • The National Cancer Institute’s (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.

  • The American Cancer Society spends less than 70 cents of each 100 dollars raised on childhood cancer.

  • Cancer kills more children than any other disease, more than Asthma, Cystic Fibrosis, Diabetes and Pediatric AIDS combined.

  • Sadly, over 2,300 children with cancer die each year.

  • Every school day 46 children are diagnosed.

  • 1 in 330 children will have the disease by age 20.

  • Cancers in very young children are highly aggressive and behave unlike malignant diseases at other times in life.

  • 80% of children have metastasized cancer at the time of their diagnosis. At diagnosis, only 20% of adults with cancer show evidence that the disease has spread or metastasized.

  • Detecting childhood cancers at an early stage, when the disease would react more favorably to treatment, is extremely difficult.

  • Cancer symptoms in children – fever, swollen glands, anemia, bruises and infection – are often suspected to be, and at the early stages are treated as, other childhood illnesses.

  • Even with insurance coverage, a family will have out-of pocket expenses of about $40,000 per year, not including travel

  • Treatment can continue for several years, depending on the type of cancer and the type of therapy given.