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Young Adult Cancer Needs

Organized by: Ricardo Dence

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January 06, 2017

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THE STORY:

Hi my name is Rico Dence, and I have Chronic Myeloid Leukemia.  As a young adult cancer survivor, I felt isolated, lost my apartment, and became depressed.  After coming out of major depression, I realized many young adult cancer survivors (AYA) have many challenges.  There are financial, emotional, and insurance challenges. I decided to travel across the country to bring awareness of needs of young adult cancer survivors, and lobby for legislative changes to benefit the AYA community

Why is this need?  72,000 young adults (18-39 year of age) are diagnosed with cancer.  Young adult cancer survivors need your help to get thought the many challenges of dealing with cancer.  Your financial support will help me start a nonprofit young adult cancer advocacy organization known as Great Ribbon Rally.

Since June 1, 2016, I traveled to 8 state capitol and hosted 8 Great Ribbon Rally events to bring awareness of young adult cancer needs.   Currently, I have 7 college interns assisting me to invite cancer agencies, medical and mental health professionals, to start gathering information, and create a pan to help the quality of life of young adult cancer survivors. 

In 2017, the plan for the Great Ribbon Rally is to host 48 young adult cancer awareness events across the United States. 

 24 of these events will be Bone Marrow Registration Drives:

-          Goal:  10% of Americans registered with the bone marrow donor registry by 2020.  The Great Ribbon Rally will be coordinating efforts with “Be the Match” to help promote bone marrow registration drive days prior to rally at varying university campuses.

 

-          Why is this needed? According to the National Cancer Institute:  Two common cancers that young adults are diagnosed are Lymphoma and Leukemia, and at times it can only be CURED with a bone marrow transplant. 

 

-          Most importantly every three minutes someone is diagnosed with a blood cancer. Thousands of children and adults are effected by leukemia or other life-threatening diseases requiring a bone marrow or stem cell transplants to be cured.  Seventy percent (70%) of those patients do not find a donor from their own families.  The function of the bone marrow registration drive will help get more people registered with the bone marrow registry and bring awareness of Great Ribbon Rally.  We are looking to supplement the success of these drives by working to pass legislation in these twenty-four states increasing the registration of bone marrow donors – the more donors we can register, the more lives we can save.

 

24 Great Ribbon Rally State Capitol Events: 

-          Goal:   Improve the survival rate of young adults diagnosed with cancer.  In 2017, we will be inviting young adult cancer survivors, friends, family, and all stake holders to learn more about the challenges of young adults diagnosed with cancer.  By inviting the verity of survivors and professionals who work with the young adult cancer population, we hope to increase awareness to this growing population and offer support and guidance for people directly affected by this debilitating disease. 
 

-          The need to improve survival rates: “Despite advances in early detection, treatment, and prevention, there’s been no improvement within the last 30 years in survival rates for this particular age group — and in fact, the gap between the survival rates of young adults and those of cancer patients in other age groups is widening” Ulman Fund.  We are looking to improve the quality and length of life for young adults cancer survivors, and by having the Great Ribbon Rally we will be gathering information to create a plan of action steps to address this major issue.

 

Goal:  10% of Americans registered with the bone marrow donor registry by 2020. Currently on 2% of United Sates is registered with the bone marrow registry. 

-          Issue:  Goal:  10% of Americans by 2020 registered with the Be the Match the National Bone Marrow Registry, so more blood cancer patients can find the much needed match.

 

LEGISLATIVE INITIATIVES

 

1.       Leukemia & Lymphoma Bone Marrow Registration Cancer Cure Bill (I have contacted 47 states about this legislative initiative)

This piece of legislation will significantly help to achieve to goal of getting 10% of United States registered with the bone marrow registry.  The legislation would require Primary Care Physicians (PCPs) to provide eligible new patients buccal swab kits to join the national bone marrow registry.  If anyone is not already registered and are between the ages of 18-44, they are eligible to join. Be The Match is the national registry of volunteer bone marrow donors and provides the buccal swab kits, needed to join the registry, free of charge to anyone interested in becoming a potential bone marrow donor

 

2.       Fertility Disclosure Bill  (I have contacted 25 states about this initiative)

This legislation requires oncologist or other appropriate healthcare professionals to discuss fertility options with young adult cancer patients prior to chemotherapy and radiation treatments.  Only thirteen percent (13 %) of young adults diagnosed with cancer are discuss fertility options prior to chemo and/or radiation treatment – we want this to increase so when young adults do beat cancer, they are able to start a family and live a normal life. 

 

I need your help to raise these funds and start improving the lives of young adults with cancer.  Some might say I am doing a lot for starting this project.  Yeah I am, I used to work as an assistant clerk for Connecticut General Assembly, and I leaned the process to pass new legislation.   I can do this.    What I do need is your help to accomplish this together.  Need your support to set up the Great Ribbon Rally as nonprofit 501c4.  When approved according to the IRS, the Great Ribbon Rally will be considered social justice lobbying organization, and your support will not be accepted by the IRS and tax deductible donation.   This is main reason many nonprofit organizations do not lobby for legislative changes. 

 

Hope you will support much needed work.  Currently 2% of USA is registered with the bone marrow registry. By getting the Bone marrow registration bill passed, this will help to get 10% of United States registered with the Bone Marrow Registry by 2020.  Donating $50 dollars or more today will help towards that goal. 

$1,380

 

2% Raised of $83,000 Goal

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  • Old Campaign

    $385

  • Eidan Bray

    $10

  • Paty Cortez

    $25

  • Douglas Hageman

    $100

  • Anonymous

    $75

  • Anonymous

    $100

  • Christian S

    $500

  • Anonymous

     

  • Jeremy

    $30

  • Anonymous

     

  • Phil Brown

    $25

  • Anonymous

    $20

  • Anonymous

    $50

  • Anonymous

    $20

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