The Big Fat Greek 5K: September 6th • Lake Calhoun • 6:30pm

 

Register Today on Active.com 

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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

  • 5:30 PM-7:30 PM on Thursday Sept 5, 2019 (Uptown, Minneapolis Running Room (1433 West Lake Street, Minneapolis, MN 55408)
  • Just prior to the race at race start location, starting at 5 PM, Sept 6, 2019

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) – $35 (includes T-shirt and  festival after-party tickets equivalent to the cost of a gyro), $40 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/ 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!

Register Today on Active.com 

 

 

 

 

 

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.

What makes a disease rare?

Chloe’s Fight Rare Disease Foundation envisions a world where research gives every child a chance to fight, no matter how rare their disease; a world in which every childhood disease has a viable and effective treatment.

Our Mission

The mission of Chloe’s Fight Rare Disease Foundation is to support research that focuses on finding and implementing effective cures and treatments for rare childhood genetic diseases and raise awareness for the 7,000 rare diseases that affect 1 in 10 Minnesotans.

Our Values

Access/Equity for affected populations: Many children suffer from diseases that have potential cures but are not receiving adequate funding for further research. We are driven to provide each child with the chance to fight by targeting rare disease research.

Fiscal responsibility/efficiency for our donors: Chloe’s Fight Rare Disease Foundation understands that our contributors make a choice to give to us, many times sacrificially. Contributions are a sacred trust. We are committed to using all funds intentionally and with the purpose of furthering our vision for a world where each rare disease has a treatment.

Transparency for contributors and supporters: Chloe’s Fight Rare Disease Foundation understands that without our faithful supporters we cannot accomplish our mission. We strive to honor each contribution by communicating clearly with donors where their dollars are going and how that money will further the vision to provide each child with a treatment option.

Our Founders

 EricaBarnes thumbnailErica Barnes, co-founder and chairman of the board of directors
Erica and Philip founded CFRDF in honor of their late daughter Chloe Sophia Barnes (July 12, 2008-November 19, 2010). In addition to promoting rare disease research, she is employed as a speech-language pathologist in both the medical and educational setting. She is also mother to Eva (age 10 going on 14)and Cade, 24 months. Her interests include traveling, reading, writing, eating good food, and gardening. She also blogs for the Huffington Post and writes fiction. She is Chloe’s Fight tireless champion and has recently become the Minnesota Ambassador for the National Organization of Rare Disease.

PhilipBarnes_portrait_thumbnailPhilip Barnes, co-founder
Philip and Erica founded CFRDF in honor of their late daughter Chloe Sophia Barnes (July 12, 2008-November 19, 2010). Philip is a wealth management business architect at US Bank. He has recently completed a Master in Business Administration at the University of St Thomas, specializing in digital marketing and leadership. Being a dual citizen and the United States and France, he is an active member of the Alliance Francaise, serving on the executive board. Philip enjoys making and consuming good food, traveling, and anything that gets him out of doors.

 

 

Board Members

Bettina Hanna
Bettina Hanna leads Hanna XP Consulting, a marketing consultancy focused on growing companies by creating happy customers. Whether she’s working with start-ups, non-profits or Fortune 50 companies, Bettina has developed ideas that deliver results.
Her passion lies in understanding people: who they are, their wants and needs. She translates those insights into business building ideas. Bettina’s experience includes 12 years in marketing leadership roles at Best Buy, and senior leadership roles at consulting firms and advertising agencies, working with companies including McDonald’s, General Mills and SC Johnson. You could say that Bettina joined Chloe’s Fight before it was even created…when she became Godmother to Chloe on August 15, 2010. Along with her husband Sam, and sons Lucas and Marcus, Bettina has supported the foundation in a variety of ways, officially joining the board in 2016.

Andrew Babula
Andrew has a unique professional profile which combines formal business training and management consulting with corporate and commercial real estate strategy. Andrew’s experience includes organizational effectiveness, process improvement, planning and strategy, and real estate development. Andrew currently is an SVP of Consulting with JLL, a real estate advisory firm. Prior to JLL, Andrew founded Varro Real Estate, a real estate consulting firm. He also led portfolio planning at UnitedHealth Group and corporate and retail real estate strategy at Target Corporation. Andrew spent three years in management consulting at McKinsey & Company, where he refined his structured problem solving skills and strategic communication. He earned an MBA from Yale School of Management with a focus on real estate and strategy. Andrew also has a BS in Electrical Engineering from Loyola Marymount University and is Six Sigma Green Belt certified. As a board member of Chloe’s Fight, Andrew helps guide the organization’s vision and strategy. He lives in Hopkins, MN with his wife and three children. Andrew enjoys travel, home improvement projects, reading, and spending time with family and friends.

Twila Dang
Twila Dang is a married mother of three school age children. She is a graduate of Hamline University where she received a Bachelor of Arts in Psychology and Sociology.  Twila is the Executive Producer and radio host for Sunday programming on myTalk 107.1. Twila is also a parenting contributor to Twin Cities Live on KSTP Channel 5.

Dr. Lorentz
Dr. Romain Lorentz was born in Orléans, France, and raised in a nearby village. He studied law both at the Université d’Orléans, where he earned his Maîtrise (J.D.), and at the Université Panthéon-Sorbone/Assas in Paris , where he completed a DEA (LL.M.) and a doctorate in Comparative Law (LL.D./JSD). He taught American Law in Paris for 2 years and at the University of St Thomas Opus College of Business for nearly 10 years. He now works for Thomson Reuters as a Legal Research Specialist. In addition, Romain served on the Board of Directors of the Alliance Française for over 6 years and he has been serving on the French American School of Minneapolis School Council for 4 years. While doing research in Minneapolis, he met his wife, Cory, at a French conversation group in 2000. Their daughter, Chloé, 10, has been friends with Eva ever since they were 18 months old. Both families’ friendship has been lasting for 10 years.Romain has been supporting the Foundation for a few years in various ways (his breakout performance was playing the leading role in the 2012 5K Coffee Strroll promotional video) before officially joining the Board in 2016.

 

Medical Advisory Board

Dr. Buss
Dr. Buss is a board certified orthopaedic surgeon specializing in disorders of the shoulder and elbow. He is the founder of Sports & Orthopaedic Specialists. His past academic affiliations with the University of Minnesota include Associate Professor in the Department of Orthopaedics, Associate Professor in the Department of Family Medicine, and Director of Shoulder Services for the Department of Orthopaedics.

Dr. Buss earned his Doctor of Medicine from the University of Minnesota in 1983. After completing his residency at the Hospital for Special Surgery (a prestigious specialty hospital) through Cornell University Medical Center in New York City, he sought additional training through a Fellowship program in the areas of shoulder and sports medicine. He is certified by the American Board of Orthopaedic Surgeons, and is a member of the American Academy of Orthopaedic Surgeons. Other academic affiliations include membership in the American Shoulder and Elbow Society, the Association of Bone and Joint Surgeons, and the American Orthopaedic Society for Sports Medicine.

Dr. Buss served as team physician for the Minnesota Twins from 1990 – 2012. He is an orthopaedic consultant to the University of Minnesota varsity athletes, Macalester College and Northshore Gymnastics. He was the medical director for the 1991 U.S. National Figure Skating and the 1998 World’s Figure Skating Championships.

Dr. Buss is the author of numerous papers and book chapters. He lectures nationally and internationally and has taught a variety of medical courses. His expertise includes topics such as open and arthroscopic shoulder surgery, impingement syndrome, the evaluation and management of elbow pain as well as shoulder problems in sports medicine, total shoulder replacement, acromioplasty techniques and the clinical presentation and surgical treatment of supraglenoid cysts.

His research can be found in such publications as the Journal of Bone and Joint Surgery, the American Journal of Sports Medicine, and the Journal of Shoulder and Elbow Surgery, and various academic textbooks. He is also a professional consultant reviewer for the American Journal of Sports Medicine and the Journal of Shoulder and Elbow Surgery.

Dr. Buss has practiced medicine in the Twin Cities since 1989 and founded Sports & Orthopaedic Specialists in 1999.

Dr. Ramaiah Muthyala
Dr. Ramaiah Muthyala holds Ph.D (Natural Products), Ph.D. (Heterocyclic Chemistry) and MBA (International Management). He is Fellow of Royal Society of Chemistry. Among other awards, he received SC Amita award from the Indian Chemical Society. He has been editor or and coeditor of books, book chapters and has been in editorial boards of ARKIVOC, Mini-reviews in Medicinal Chemistry. For the last 12 years, Dr. Muthyala has been at the University of Minnesota where he was Associate Director, Center for Drug Design, and Associate Director (pre-clinical development) Center for Orphan Drug Research. He is also Associate Professor, Department of Experimental Clinical Pharmacology and Adjunct Professor, Department of Medicine. His research interests focused in rare diseases – the discovery and development of therapeutics for drug resistant bacterial infections, neurological diseases such as SCA1 and hemoglobinopathy such sickle cell disease. In his research, drug repositioning takes major emphasis to discovering drug leads.