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? Read on! To find out about scheduled races and how to register, check out the Races area of our website. Debbie said, "I learned so much from other race organizers. None were professional fundraisers, they were committed parents just like me. I learned that they were all making a difference. Their ideas were creative, inspiring and lucrative. Hundreds of thousands of dollars have been raiser over the past four years. In four short years we have already funded nearly a million dollars of medical research." Where Do You Start? The Society provides a comprehensive How To Packet 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." If you're interested in receiving a packet take a moment right now to email Angela and Luis Guajardo at angela@mpssociety.org. Angela and Luis are parents of a 12-year-old daughter, Karina, with MPS III-A. They have agreed to coordinate this year's runs nationwide. Over the last four years, 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. . 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 the Pfall Pfun Run for Karina in Pflugerville, Texas Luis and Angela work with a local high school stadium connected with one of the city's hike and bike trails. Luis and Angela reported that this race course worked out great and that "The City of Pflugerville Parks and Recreation Department has become closely involved ever since they have taken the race under their wing and cosponsored it free of charge". 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. Alicia Bennett, whose 3 children have MPS III-A, went through her kitchen cabinets c ollecting websites addresses from product labels. She e-mailed the companies requesting samples of their products to include in the gift bags distributed at Ciara's Sunshine Fun Run. Sissi Langford mother of Joe and Maggie, both of whom have MPS III-A, recommends having a non-MPS parent acting as the race coordinator if possible stating "We could not have done this without Allison Burbage who kept things going and kept me calm." Sissi and Allison spent 3 months sending out letters to local businesses, especially in their field of architecture and construction, to raise money for Joe and Maggie's Walk for MPS. Sissi said, "We had three large mailings and kept track of who we had already sent them to so we didn't keep bothering people who'd already donated." 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? Our National sponsors have included Genzyme and TKT. Coca-Cola, Athlete's Foot, Starbucks Coffee, and Kroger sponsored the Run for Erin. Super Pretzel, Butter Buds, NuSalt, and Physique Shampoo sponsored Ciara's Sunshine F un Run. Albertson's provided water and snack packs at the Pfall Pfun Run for Karina. AT&T, CSX Lines, Teamsters, Cal Worthington, and Exxon sponsored the Phantom 5K Stroll for Sean. At Joe and Maggie's Walk for MPS, Joe and Maggie's sister Jessie, who works for Outback Steakhouse, arranged for sponsorship. Outback Steakhouse came to the event and prepared burgers and chicken sandwiches the served over 200 people while a local band provided live music. Sissi Langford also arranged for a local TV celebrity to attend and MC the event. A professional photographer was on hand to gather snap-shots for the website and help promote the 2004 runs. Sissi created over 30 signs to teach people about MPSIII and found $100 sponsors for each sign. The signs contained questions and short answers printed on 11x17 foam core board with stakes. The signs were placed along the walk path prior to the walk and participants had an opportunity to learn while they walked. Sissi also added, "Joe and Maggie ran around a lot which helped raise awareness and bring a focus to the teaching signs." Do runners get T-Shirts? The MPS Society provides T-shirts with the MPS 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. A few heart warming stories At 5K for T.J, the morning started out cold, gray and raining. As folks set up tents and tables preparing for the noon event, the weather seemed to get even worse. T.J.'s, mom Laura Catanzarite recalled, "At 11:30 T.J., who has MPS III-A, arrived and became our sunshine. As if by magic the clouds melted away and the most glorious blue sky and warmest fall sun appeared." T.J.'s sister Sarah sang the National Anthem kicking off the festivities and his 8 year old brother Anthony, ran the race like a pro. At the Pfall Pfun Run for Karina, the high school track team had meets and could not participate, so instead, the two track coaches got their Psychology Classes involved. Both of Karina's grandfathers won 1st and 2nd place in the 60 & over age division." This event was also special in that five MPS families joined together from the Houston TX area. At the Minnesota MPS Fun Run, the day started off with a downpour, which slowed to a drizzle and eventually stopped. Event organizer Kathy Rouch-Sheridan said, "The fall colors were at their peak. All the MPS children and their siblings went home with pumpkins and we had at least 100 baked goods that were used as door prizes. After a feast of hot dogs, chips, cookies, our group departed amid hugs, tears and promises to return next year." 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 P eters 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 Races and Registration section of the Society's website participants can register to participate in the events, donate, and find out additional information about the walk/runs around the country. Consider a Run!!! Won't you consider organizing an MPS Society Walk or Run in 2006? Linda Shine, mother of Katie who had MPS III-B, is the inspiration behind The National MPS Society's walk/run. 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!" In 2006 more than $300,000 was raised to support medical research. Our first million-dollar year should be just around the corner. 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!"