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FocusOnRhabdo.org

An Online Community of Researchers,
Clinicians, and Families Dedicated to
Making Rhabdomyosarcoma a Universally
Survivable Disease

What is Rhabdomyosarcoma?

Rhabdomyosarcoma (RMS or Rhabdo) is an aggressive and highly malignant form of cancer that forms in the soft tissues and is thought to arise from early skeletal muscle precursor cells. It can occur anywhere in the body but is most generally found in the structures of the head and neck, the urogenital tract, and the arms or legs but can also form in parts of the body without muscle, such as the bile duct, the prostate, or along the meninges, the membranes that line the skull and vertebral canal. While generally thought of as a childhood disease—a majority of cases are found in children and young adults—it is not uncommon to have adult patients diagnosed with Rhabdo as well.

Rhabdomyosarcoma is considered a rare cancer—with roughly 350 cases diagnosed in the US each year—although it is the most common soft-tissue sarcoma in children and adolescents under the age of 20. With so few cases to be seen, it is unusual for any pediatrician or primary care physician to see one, let alone a number of patients with this disease.

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A New Rhabdomyosarcoma Diagnosis?

If you or a loved one just received a diagnosis of rhabdomyosarcoma (RMS), we are sorry that you’re here, but you’ve come to the right place.

Being informed that you, your child, or someone else you love has been diagnosed with rhabdomyosarcoma (rhabdo or RMS) can be frightening, depressing, and totally overwhelming. Since it is a rare form of cancer, many pediatricians and primary care physicians may not be prepared to talk about it in any depth. It will be up to you to become as knowledgeable as you can so you can be an active advocate for yourself or your family member. FocusOnRhabdo.org is here to help as much as possible. Just knowing that you’re not alone can help ease a little of your anxiety. Join our on-line video conference support group and our Facebook Support Group and, if you can, find a local group that can assist you in coping with all that is going on.

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Link to NIH Clinical Trial Database for Rhabdomyosarcoma

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Resources for Rhabdo Families

Below is a list of resources that we feel can be helpful to families starting out on their Rhabdo ‘Journey’ as well as those who have or are currently going through it. The Journey is not an easy one, and the various resources on this page could assist in some important areas.

This page is always a work in progress. If you are aware of any additional resource that you feel should be listed here, please let me know.

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The Latest in Rhabdo News

from Medworm.com

Focus On Rhabdo Announcements

The New FocusOnRhabdo Website is Live

We've turned on our new website. Please take a few minutes to review the material and PLEASE let me know if there is any information that was left out. If you know of any resource that is not listed, let's list it. If you know of any foundation or organization that...

Of Interest to Our Community

New tools used to identify childhood cancer genes

New tools used to identify childhood cancer genes UT SOUTHWESTERN MEDICAL CENTER DALLAS - July 3, 2018 - Click Here for Original Using a new computational strategy, researchers at UT Southwestern Medical Center have identified 29 genetic changes that can contribute to...

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The war against childhood cancer: Who’s winning?

[COMMENT: One point made here is that there hasn't been much progress with the more rare childhood cancers because they are rare.  We need to change the paradigm for clinical trials for rare cancers and reduce the number of participants needed to begin the study. This...

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Advocacy Initiative Updates

A Growing List of Signees

As parents, grandparents, family members, friends and patients of a rare form of cancer we need to actively advocate for ourselves. A letter was recently sent by Dr. Sharon Hammond of Summer's Way Foundation to the Biden Moonshot Initiative Scientific Research...

Notes From the Lab

From the Laboratory of David Kirsch – Duke University

Over half of all cancer patients receive radiation therapy, and it contributes to over 40% of cancer cures. As the efficacy of immunotherapy has been established in multiple cancer types, there has been tremendous excitement about combining radiation with...

Foundations and Organizations that Support Rhabdo Families and Research

There is no doubt, research costs money and the National Institute of Health doesn’t provide a great deal of money for pediatric cancer research. And of the money they do allocate, only a very small portion goes to fund rhabdomyosarcoma research.

Much of the funding comes from charitable, non-profit foundations, many of which were started to memorialize a child who lost the battle with this incredibly aggressive disease. By running various fund-raisers, these groups support much of the laboratory research that has been ignored by Big Pharma and our government. If you can, please donate to any of these organizations and ask that your donation be used for rhabdo research.

We are hoping that many of these organizations, especially the smaller ones, will join together into a coalition to support rhabdo research. By bringing together a lot of ‘smaller’ donations, we can create larger grants for our researchers to compete for.

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© Copyright 2018
Alan Ehrlich,
FocusOnRhabdo.org

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