Host your own event

Have you been thinking about having an MPS Society walk/run this year?

Have you had a run in the past and want new ideas for this year’s event?

Are you hoping to start a walk/run in your hometown? Become part of the team!

Where Do You Start?
The Society provides a comprehensive How To CD with checklists and details for hosting an event. The packet also contains information for securing a place to hold the event, obtaining release of liability forms, Society insurance details, researching the need to have a police officer at the event, handling checks and money, entertainment, and soliciting contributions. 

Contact us to request more information or check out our event guides.

The most consistent advice we can pass along from prior Walk/Run organizers is to: “Start early and pull together a group of volunteer organizers you can really depend on.” Talk to your dependable friends and coworkers about getting involved. As Stacy Peters learned organizing the Run for Erin. “You can never have too many volunteers – so delegate specific tasks and get commitments in writing as needed.” Stacy’s daughter Erin has MPS III-B.

To find out about scheduled races and how to register, check out the Events Calendar or homepage of our website.

Attending a walk/run is a great learning opportunity.  After participating in a race, one member commented, “I learned so much from other race organizers. None were professional fundraisers; they were committed parents just like me.” For a decade the National MPS Society members, families and friends have committed to walk/run fundraisers throughout the country. Each of these events have brought us one step closer to finding treatments and cures for MPS and related diseases. We continue to increase awareness and funds for research by educating one person at a time.

The program continues to be a success year after year.  Whether large or small, each event is successful at raising awareness, reaching out amount the community and involving thousands of people in cities nationwide.  

The Society thanks all of the coordinators and many volunteers for their hard work in making each event successful.

Where are walk/runs held?

Depending on where you choose to have the event, the specifics about reserving a location vary. In many cases, it is best to reserve your location 6 months in advance. Consider the size of your event, as events have ranged from 20 to over 500 participants. Also, think about the weather in your area and if you need to have shelter or set up tents. Many of the events were held at local high schools that did not charge any money. For one event the park charged $160 but the course was so beautiful participants all plan to return again next year. Often high schools and parks provide seating (bleachers or shelters), parking, and bathrooms without having to close off roads. Consider the pros and cons of each location you consider.

At Nathan’s North Carolina Walk/Run for MPS, the participants enjoyed a beautiful course along the base of the mountains in Boone. The course incorporated nature, bridges and waterways. Whether you walked or ran the 5K, the course was beautiful and was outlined in awareness story boards about MPS and ML.

Kathy Rouch-Sheridan held the Minnesota MPS Fun Run at the lovely wooded Minnehaha Park where the racecourse took participants across a river, under a grape arbor and over a rushing waterfall. Kathy’s son Michael has MPS I.

How does a race make money?
The National MPS Society Walk/Runs are sponsor events – not pledge events. This means that participants are asked to obtain sponsor funds in advance to be turned in on the morning of the race. Many unique ideas were used to raise sponsorship support for the event. The Society has templates families can use to approach local businesses.

Kathy Dobrowolski, whose son Daniel has MPS II, had this advice to add from her experience raising money for Dash for Daniel. “Realize that you will hear a lot of ‘No’s’ as you solicit sponsorship support ? don’t let that get you down. Asking in person makes it harder for people to say no (at least right away)”.

Do we attract national sponsors?
We have attracted a number of national sponsors each year. They are not all inclusive with each event. Ask for corporate donations, but always remember your local vendors too! Many of your local businesses or presenting to the Chamber of Commerce in your neighboring towns will light an ignition.

Do runners get T-Shirts?
The MPS Society provides T-shirts with the current walk/run program logo on the front. Several people use t-shirt space as an incentive for sponsors. For example, if an individual or business donates $500, their logo is put on the sleeve. For donating $250, the logo is printed on the back. Different dollar amounts can also correspond to different logo sizes and placement on the shirts.

Every race is different
Think creatively and the organization will be rewarding and fun. 
At Ciara’s Sunshine Fun Run, there was plenty of room for a fire truck and the fire chief was the honorary chairperson. After the race was over, the kids received free truck rides around the track. Alicia Bennett stated, “Kids loved the fire truck and it gave the Chief an opportunity to interact with his community too!”

The Phantom 5K Stroll for Sean got its name because this run takes place only in spirit. Given that October temperatures in Anchorage, Alaska are sub-zero and the ground is covered in snow, running is too dangerous. Ernie and Debbie Dummann, parents of Sean, MPS III-A conducted all the normal run activities like ordering t-shirts, water bottles, assembling runner’s bags, advertising, and writing over 400 letters. But instead of holding a race, they set up a both at a local mall, sold items, and took in more donations. Debbie said, “Sean was present at the registration table in the Mall and he enjoyed all the attention ? especially since we conducted the event on October 13, Sean’s 24nd birthday! Our nonevent attracted over 200 participants.”

Stacy Peters and several other races had help from boy and girl scout troops. Unique to Stacy’s Run for Erin, the scouts organized a tattoo booth where the young and old donated money for temporary tattoos! Stacy added, “Though the event seemed to be enjoyed by all, the one having the most fun was Erin herself. Stationed at a midway point, Erin smiled, clapped and waved to all those who came out to support medical research to find a cure for MPS.” Stacy also placed MPS medallions around the necks of the MPS children who attended the event including Erin Peters, Walker Griffin with MPS III-A, and Savannah and Jennifer Prince, both of whom have MPS I.

Dorothy Mask has coordinated 10 years of walk/run events for research. Her son Ryan is now an angel and suffered from MPS. Dorothy and her family do not worry about how much money they raise or about how many people show up each year. What is important to her is having the opportunity to teach people about MPS. Dorothy continues to fundraise for the National MPS Society because it helps release the feeling of helplessness. It allows her to focus her energy on something positive and it gives her a great deal of satisfaction to know that she is doing something to fight to find a cure for this devastating disease

What happens after a race?
After the event everyone is exhausted. Kathy Dobrowolski reported, “Yes, we collapsed from exhaustion. Didn’t do much of anything the rest of that day or night!” Tami Slawson had the same sentiment stating, “It was like planning a wedding. The greatest day of your life, but totally exhausting!” Tami’s children, Jacob and Samantha, have MPS I.

After recuperating, all of the event organizers sent thank you notes to sponsors and volunteers. Debbie Dummann sent formal letters along with platinum, gold and bronze certificates. Sissi Langford had professionally printed post cards with a picture of her two MPS children, Joe and Maggie, on the front – she hand wrote thank you messages on the back. Stacy Peters printed thank you letters on her home computer and Tami Slawson set up a database for thank you notes and bookkeeping to make the process easier in years to come.

Websites and Online Donations 
Through the Events section of the Society’s website, participants can register for the events, donate, and find out additional information about walk/run events around the country.

Consider a Run!!!
Won’t you consider organizing an MPS Society walk or run? Linda Shine, mother of Katie who had MPS III-B, is the inspiration behind The National MPS Society’s walk/run program. Linda commented on the importance of the MPS walks and runs:  “Our goal is to keep growing. We hope all of our efforts will eradicate this disease…. Until then we run, we walk and we work for a cure. Our efforts are paying off. Keep running!”

There really is nothing more important or motivating than finding the cures for MPS and related diseases. We encourage everyone to hold some type of an event in his or her community. Be creative, and most of all, have fun!”


Our Mission

The National MPS Society exists to cure, support and advocate for MPS and ML.

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