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.
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/
February is a month that brings to mind sweets, so it is fitting that Amy’s Cupcake Shoppe in Hopkins is partnering with Chloe’s Fight Rare Disease Foundation throughout the month of February to raise awareness and funds for rare diseases. Read & watch the Kare11 coverage of Chloe’s Cupcake.
The “Chloe Cupcake” was designed by Amy after she heard the story of 2-year-old Chloe who lost her life to the rare neurodegenerative disease metachromatic leukodystrophy (MLD). In 2013 Erica and Philip Barnes started Chloe’s Fight Rare Disease Foundation with the mission of raising funds for research into lysosomal storage diseases as well as awareness for the over 7,000 rare diseases that affect 1 in 10 Minnesotans.
February 28th is Rare Disease Day, so Amy will make the cupcake available in her store from Feb. 1 through 28th. A portion of the proceeds will go to research at the University of Minnesota focused on rare diseases.
To find out more about Chloe’s Fight visit www.chloesfight.org or email email@example.com. Amy’s Cupcake Shoppe is located on 7th Ave and Main Street in downtown Hopkins. For hours of operations visit www.amyscupcakeshoppe.com
Wednesday, February 28th, 2018 10-12:00pm State Office Building Room 500N (100 Rev Dr Martin Luther King Jr Boulevard, St Paul, MN)
Join us at a State House Reception as we make the voice of rare diseases heard in Minnesota! This session, state legislators will be voting on a bill to create the Chloe Barnes Rare Disease Advisory Council. The council gives the rare disease community a direct voice to our lawmakers. This year’s reception will feature patient advocates, researchers, and legislators who will talk about the issues that the advisory council will address Sign up here to let us know you can attend.
What is Rare Disease Day?
On 28 February 2018, people around the world living with or affected by a rare disease, patient organisations, politicians, carers, medical professionals, researchers and industry will come together in solidarity to raise awareness of rare diseases. The Rare Disease Day 2018 theme ‘Research’ recognizes the exciting advancements research will be making in the next few years to improve the lives of people living with rare diseases. People living with a rare disease and their families are often isolated. The wider community can help to bring them out of this isolation. Patients and patient advocates use their voice to bring about change that:
- Ensures that politicians continuously and increasingly acknowledge rare diseases as a public health policy priority at state, national, and international levels.
- Increases and improves rare disease research and orphan drug development.
- Achieves equal access to quality treatment and care at local and national levels, as well as earlier and better diagnosis of rare diseases.
- Supports the development and implementation of national plans and policies for rare diseases in a number of countries.
- Helps to reduce isolation sometimes felt by people living with a rare disease and their families.
Rare Disease Day amplifies the voice of rare disease patients so that it is heard all over the world. The patient voice:
- Is stronger when patients receive training so that patient advocates are equipped with the skills and information that they need to be able to represent the patient voice at the local, national and international level, within and on behalf of their patient organisations.
- Is vital because rare disease patients are experts in their disease. In situations when there is often a lack of medical expertise or disease knowledge because a disease is so rare, patients develop expertise on treatment and care options. With this expertise, the voice of a rare disease patient is often more inherent to the decision-making process regarding their treatment or care options.
- Is increasingly present and respected in the medicines regulatory process, during which patients bring real-life perspective to the discussion. This voice needs to be encouraged to become stronger all along the life cycle of the R&D process, from the early stages of development of a medicine, right through to when the medicine is in use in a wider population of patients. This will help to ensure that medicines are developed more efficiently and in turn will result in patients accessing more, better and cheaper treatments at an earlier stage.
Has your grandma knit you a, uhm, unique sweater? Did your sister give you a tie that no one in their right mind would ever wear? What about those great shoes you bought that you want to show off? Rare Disease Day 2017 is your chance! About 300 million people worldwide are living with some kind of rare disease. Of the 7,000 diseases only about 400 have an effective treatment.
Show your support for these individuals by wearing something one-of-a-kind on Tuesday, February 28th and wear one of our “Wear Something Rare” buttons to let your friends and coworkers know why! Contact us or pick up one of the “Wear Something Rare” buttons at Amy’s Cupcake Shoppe.
When: Model your “Rare Wear” with pride along with the button on February 28th – you will be able to pick up a button from the location below during the whole month of February
What: A fun dress-up event following a month long campaign to raise awareness for individuals whose lives have been touched by a rare disease
Where:The buttons are available at Amy’s Cupcake Shoppe in Downtown Hopkins
This year, you’ll be able to create a team of runners and/or walkers or even create your fundraising page to share with friends who can’t support you in person.
More Details Coming soon!
Come to the fourth annual Chloe Fest to honor the memory of a brave little 2 year old who died fighting a degenerative disease called metachromatic leukodystrophy (MLD). Every penny raised will go directly to cutting edge research at the University of Minnesota. To learn more go to www.chloesfight.org and let’s add MLD to the list of previously terminal childhood illnesses!
Here’s what we’re going to do to pitch in for this fight. A .09 mile walk/run/skip. That’s not a typo, we want you to join us for a 9/100 of a mile walk around the circle of our neighborhood to help raise money for this cause. We will get everybody signed up/registered from 10:30-11:30am and spend the next half hour getting everybody ready for the big walk which will kick off at noon.
Entry fee will be $25 for adults, $5 for kids. For your $25 you will not only get to help out a great cause but you’ll get plenty of food and plenty of great beer specially crafted for this event by some fantastic homebrewers. Lemonade will be provided for the kids and non-beer-drinkers. We’re also working on getting some raffle items so make sure you save a few bucks for that as well.
When: May 21st, 10:30AM – 2 PM
Where: The Isenberg’s Home, 7608 Elm Grove Cir, Minneapolis, MN 55428-3878
What: 0.5k walk & Green Egg BBQ
Rare Disease Day is celebrated around the world on the last day in February. It is an internationally recognized day designated to raise awareness for the over 7,000 rare diseases that affect the lives of millions. Here is how you can get involved this year in Minnesota:
In partnership with NORD (National Organization of Rare Disorders), the official US sponsor of Rare Disease Day
Thank you to all who participated in the 2018 Big Fat Greek 5k and mark your calendars for September 6, 2019! Thanks to all of our great sponsors listed below all registration and fundraising proceeds will go to physician researchers at the University of Minnesota Children’s Masonic Hospital. Look for updates as we make plans throughout the year.
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
- 4:30 PM-8:00 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
- 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 Toga Race (Start Line)
- 6:40 PM – Start of 5K Run (Start Line)
- 6:45 PM – Start of 5K Walk (Start Line)
- 7:30 PM – 10:00 PM Post-race party (Taste of Greece, 34th & Irving)
- 8:00 PM – Award Presentation (Taste of Greece)
Individual Adult Walker/Runner (18 and older) – $25-$35 (includes T-shirt and festival after-party tickets equivalent to the cost of a gyro)
Youth (13-17 years old) $10 (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 – $25-30
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!