Chloe’s Fight First PRI in partnership with the Venn Foundation

In February, Chloe’s Fight joined the University of MN in a groundbreaking Venn Foundation PRI, focused on helping commercialize an Osteosarcoma Prognostic Test. The focus of this project is to take the promising research of Dr. Modiano and help bring it to market for the benefit of society. Chloe’s Fight Rare Disease Foundation is committed to continue to look for ways to partner with other rare disease organizations and fund research that could benefit children because TOGETHER, WE ARE STRONG.

With the support of donor partners, Venn will provide the University with $302,500 in PRI funding to help Dr. Modiano prove that the approach previously validated in dogs can also work with humans.  

Once proven in humans, the University hopes to license the technology to a company that will take it to market for the benefit of patients and their families.  

If the University earns revenue from the license, the University will split it with Venn on a 50/50 basis up until a maximum 3X return of the original Venn funding.  After applying a success fee, Venn will allocate this return pro rata to Chloe’s Fight and other participating donor accounts, where donors can then recommend redeployment of those dollars into new PRIs or grants.

Click below to download the fact sheet on the project.

The Big Fat Greek 5K: September 11th • Lake Bde Maka Ska

 

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Some of the highlights include:

• Top male and female 1st place prizes from the Running Room
• After-party tickets included with each adult registration to the Taste of Greece
• Kid’s Dash
• Greek-themed Photo Booth

 

Packet Pickup

  • In an effort to reduce plastic waste, we will not provide physical packets this year
  • Prior to the race on Sept 11 starting at 5:30 PM, you may pick up your shirt and race bibs

Pre-Race Activities

  • Hair coloring (Kid’s Tent)
  • Greek-Themed Pictures (Photo Booth)

Race Start Times

  • 6:00 PM – Zumba warm-up (Main Stage)
  • 6:30 PM – Kid’s Race (Start Line)
  • 6:40 PM – Start of 5K Run (Start Line)
  • 6:45 PM – Start of 5K Walk (Start Line)

Post-Race Activities

  • 7:30 PM – 10:00 PM Post-race party (Taste of Greece, 34th & Irving)
  • 8:00 PM – Award Presentation (Taste of Greece)
 
Registration Prices:
Individual Adult Walker/Runner (18 and older) – $30 (includes T-shirt and  festival after-party tickets equivalent to the cost of a gyro), $35 day of
Youth (13-17 years old) – $15 (does not include T-shirt or festival after-party tickets)
Children (12 & under) – FREE (but must still register to participate in the Kid’s Dash)
Team Members – 5 adults minimum – $5/ person discounted registration fee

More Race Day Info:

  • PARKING – The closest pay parking lot to the 5K Start/Finish line is the Lake Calhoun Richfield Road Parking Lot, situated between Lake Calhoun & Lakewood Cemetary. But we suggest parking in the neighborhood close to the Taste of Greece so you’re closest to the after-party (3450 Irving Ave S., Minneapolis)

Click on one of the buttons below to register – More details & pics above!

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Rare Disease Month

Wear Something Rare Happy Hour

Join us at LTD Brewing on Tuesday, February 27th 2018, evening from 4-9

Our friends at LTD Brewing are helping us raise funds and awareness by hosting a Wear Something Rare Happy Hour for Rare Disease Day. Come show your support at one of our favorite breweries. It’s like Halloween in February. With beer and science.

Give to the Max

This is the first year Chloe’s Fight Rare Disease Foundation has participated in Give to the Max. Participation is super easy. Either mark your calendar for a day-of donation, or donate today in advance. It’s generous donors like you who will make the world a better place for children with a rare disease – thank you!

Click on the logo below to donate to Chloe’s Fight as part of our Give to Max campaign.

Rare Action Network in MN

The Rare Action Network℠ (RAN) is the nation’s leading advocacy network working to improve the lives of the 30 million Americans living with a rare disease at the state level. RAN serves as a broad spectrum of stakeholders ranging from patients, to their families, caregivers, and friends; from researchers to industry; to physicians and academia. While working predominantly at the state level, the network will filter information up to NORD’s national federal policy team to help address issues of national concern.

In order to make meaningful change in the lives of rare disease patients and their families in the state of Minnesota, we need you! Become active with the Rare Action Network by joining and utilizing the resources available on this website to take action and create change.

Want to learn more about the Minnesota Rare Action Network and how you can get involved? Come out and meet your Minnesota State Ambassador at the Southdale Library from 7:00 pm to 8:30 pm! It is a great time to network with other advocates and discuss issues facing the Minnesota Rare Disease community.

Like the Minnesota Rare Action Network on Facebook: https://www.facebook.com/RANMN/

Please feel free to contact Erica Barnes (State Ambassador, Erica.Barnes@rareaction.org) or Kay Lewis (Community Outreach Liaison, Kay.Lewis@rareaction.org), with any questions.

When? Every third Thursday of the month, from 7-8:30 PM
Where? Southdale Library, 7001 York Avenue South Edina, MN 55435
Host? Erica Barnes (952) 457-6956

 

Find out more here: http://rareaction.org/resources-for-advocates/state-action-center/minnesota/

What Do Treatment Options for Children with Rare Diseases Depend On?

(First published as an insert in the USA Today published on Sept 1, 2017)

Imagine you are a prize fighter facing the toughest opponent of your life. You step into the ring only to realize you have no boxing gloves and no corner man to coach you through the fight. You have the heart but not the necessary tools.

Now imagine your opponent is a terminal illness and what you are missing is a cure and doctors able to offer you viable treatment options. This is the harsh reality for millions of American children who have been diagnosed with a rare disease.

Finding research incentives

The National Institute of Health estimates that there are roughly 7,000 rare diseases affecting 25-30 million Americans. Only about 500 of these diseases have any sort of treatment option and rare diseases disproportionately affect children. Only 30 percent of these children will live to their fifth birthday.

In 1983 Congress passed the Orphan Drug Act. This landmark piece of legislation provided a set of incentives that encouraged the pharmaceutical industry to consider rare disease drug development as a profitable business prospect and thereby increased interest in rare diseases in the private sector. Less attention, however, has been given to the creation of public institutions that support research crucial to medical advancement in genetics, which would greatly benefit the rare disease community.

The formation of a number of departments within the National Institute of Health such as the Office of Rare Disease Research and the Office of Rare Disease Research at National Center for Advancing Translational Science are hubs of cutting-edge research that provide the essential knowledge advancements. The pharmaceutical industry then uses these advances to develop life-saving drugs for rare diseases. Rare disease treatments depend on these public-private partnerships. Without this synergy millions of children with rare diseases would be completely excluded from opportunities for medical advancement available to children with more common diseases.

Children need our help

As Americans, we operate under the assumption that society owes each child born into this world a certain set of opportunities and protections. We fund public education because all children deserve an education. We fund federal departments that prevent child exploitation because all children deserve protection. Let us continue our commitment to each child born into this country by agreeing that every child deserves a treatment option no matter how rare the disease. Let’s find 7,000 more boxing gloves because every child deserves the chance to fight.

Medicaid Is A Lifeline For Children With Rare Diseases

As America’s lawmakers debate various ways to fix our broken health care system, we in the rare disease community are alarmed by proposed cuts to Medicaid funding. The term “rare disease” is a bit paradoxical. When viewed individually, a particular disease may affect a minuscule portion of the population. But when considered as a whole, roughly 1 in 10 Americans live with a rare disorder. For some the rare disease is progressive and eventually fatal, as in the case of those of us parents who have watched our children develop typically before the onset of a neurodegenerative disease slowly robs them of their function and eventually their lives. For others, the disorder is manageable with diet modifications, scrupulous monitoring by medical specialists, or changes to our environments that allow us to work and function in society.

Nearly all of us have lived through the frustrating experience of the “diagnostic odyssey.” The diagnostic odyssey is a term used to describe the journey through the medical system a rare disease patient makes in order to receive a diagnosis. The average rare disease patient often waits months to years for a diagnosis and is misdiagnosed multiple times. The financial devastation for a patient on this journey is often extraordinary and the prolonged time spent searching for a diagnosis has a negative impact on an individual’s ability to stay employed and maintain insurance coverage. At the end of this odyssey, the relief of finally getting an answer is quickly replaced by the painful fact that only about 300 of the 7,000 rare diseases have any sort of an effective treatment.

Because society has not found cures or effective treatments for even 5% of rare diseases, our community depends on social safety nets for our survival. While many Americans think of Medicaid as primarily a program for low-income families, Medicaid is also a lifeline for the disabled community made up of people who face a lifetime of chronic illness. For those of us with impaired children and full time jobs, Medicaid subsidizes our private insurance with specialized care so that we can go to work and remain taxpayers. Medicaid is the difference between putting our children in a nursing home (a far more expensive option in the long run) or having them home with their siblings and parents. For working adults with a rare condition, Medicaid is the assurance that if our disease increases in severity ­– as it does at unpredictable times – we won’t go without vital medical care between losing one job and finding another. Medicaid is the knowledge for those of us who are caregivers for our disabled adult children that when we can longer work and provide private insurance coverage our children will still be cared for.

Our rare disease community is vast and diverse. Rare diseases do not discriminate between race, socioeconomic status, or geographical region. We hear people casually repeat caricatures of Medicaid recipients and we wince at the oversimplifications. When we listen to the debates raging around us regarding the future of Medicaid we simply ask you to look past the stereotypes and consider the very real consequences Medicaid cuts will have on real people in your community living with rare diseases.