Cure JM Foundation Newsletter

 

FEATURED STORY

Look Out, Seattle!  Here Comes Cure JM!

Annual Conference Storms Pacific Northwest
June 23rd - June 25th

 

 

Cure JM supporters from around the globe will visit the birthplace of Starbucks and grunge music when Seattle hosts the foundation's annual national fundraiser and educational conference June 23 to 25, 2011.

 

Since 2006, the annual conference has given Juvenile Myositis families the chance not only to meet each other but also to learn about medical advances from top international JM specialists. The event, a rallying point for our nonprofit's annual fundraising drive, usually generates about half of Cure JM’s yearly budget – roughly 98 percent of which pays for research into a cure, JM education and awareness work or support services for families affected by this rare autoimmune disease.

 

More than 50 families have already committed to attend the weekend event while many others will serve as "virtual volunteers," raising funds and awareness without leaving their homes.

 

What's happening at the conference

 

The Seattle event starts with an informal welcome dinner Thursday, June 23, at 6 p.m. The conference starts the next morning with breakout sessions hosted by Cure JM's volunteer leaders and other JM families. That Friday afternoon, leading JM specialists Dr. Lisa Rider (National Institutes of Health), Dr. Ann Reed (Mayo Clinic) and Dr. Lauren Pachman (Chicago Children’s Memorial) will present medical research updates and hold a Q&A panel discussion. A networking cocktail reception and volunteer recognition dinner ends the day.

The conference culminates Saturday morning at the Seattle Rock 'n' Roll Half Marathon and Marathon. Teams of Cure JM supporters will run, walk or volunteer at the race to raise awareness and funds to continue Cure JM's mission: To never, ever let another child suffer from Juvenile Myositis.

Get involved – whether going to Seattle …

 

For those planning to attend the Seattle conference, do the following to ensure you receive all event updates and receive your Cure JM T-shirt before arriving:

Step 1:  Register! Go to www.firstgiving.com/curejm; click the “Register for an Event” link at the top, select the June 23 Seattle event, and then choose "Yes register online now." Whether you are running or volunteering, you'll be asked to set up a fundraising page. While we'd love everyone attending to try to raise even a little money for the cause, note it is only encouraged and NOT required for attendance.

 

Step 2:  Visit http://www.curejm.com/marathons_11/seattle.html for travel details and other helpful event information. Most past attendees find staying at the conference hotel a great convenience and savings as we have a negotiated group rate. The group rate is only available for reservations made by June 2.

 

Step 3: Watch for email communications from Rhonda McKeever, Cure JM's chairman and the event's organizer. Ensure your spam filter allow emails from Rhonda.McKeever@curejm.com

 

… or while staying at home!

 

Every year some Cure JM supporters can't make the event but raise funds and show support by becoming "virtual volunteers" for the conference. This can also be done by registering through www.firstgiving.com/curejm, but choosing "vitural volunteer" when asked how many people are registering.

 

You could also enter a race or walk near your home to raise awareness and funds for Cure JM Foundation. It’s very easy to do by registering for the local event and then creating a personalized fundraising page through www.firstgiving.com/curejm. Links to the page can be emailed to friends, family and co-workers to solicit support.

 

WHAT'S NEW

Frequently Asked Conference Questions

Q:  How much does it cost to attend the Seattle conference?

A:  While you must pay for your transportation and accommodations there, the conference is otherwise FREE to those who register. Corporate sponsors and the generous personal donations of several Cure JM board members fund the rental of the conference space, T-shirts, refreshments, speakers' travel and lodging and other event expenses. (However, Cure JM does suggest people attending the Friday recognition dinner make a contribution that night to help defray the food cost.) In this way, nearly every dollar attendees and virtual volunteers raise for Cure JM in conjunction with this event goes toward the foundation's cause of funding research, raising awareness and finding a cure and not toward overhead.

 

Q.  Can we bring children to this conference?
A.  Absolutely. As Juvenile Myositis affects children, this is a family friendly event. During the Friday educational events, we will have an adult-supervised room for children filled with fun activities.  JM kids and young adults attending past events have enjoyed getting to know others their own age facing similar challenges.

 

Q.  Our grandparents (or others) are interested in learning more about JM. Can they attend, too?
A.   Absolutely. Every year several grandparents or other close relatives of JM kids attend the educational events to learn more about JM. Just be sure to register the number of people attending, so we can plan meeting space accordingly.
 

Q.  How do I go about fundraising to support the Seattle event?
A.  It is easier than you think and most JM families new to fundraising have been pleasantly surprised by generous support of their friends and family. Go to www.firstgiving.com/curejm and click the “Register for an Event” link near the top of the page. Click the “Rock 'n' Roll Seattle Marathon, Half Marathon Cure JM Annual National Educational Event” link.  Follow the instructions to complete the registration and create a personalized fundraising page. Once you set up your FirstGiving page, you will receive updates about the event and you can then email your page's URL address to friends and family for donations. Still need help? Online chat support and an FAQ are available on the FirstGiving web site or you can email Rhonda.McKeever@curejm.com

Q.   Is it too late to register to run in the June 25 marathon or half marathon?
A.  Yes. Both events are already sold out.

Q.   I am interested in volunteering on race day (June 25). What should I expect?
A.   Race day volunteering is fun, inspiring and a great way to support our runners and create awareness of Juvenile Myositis in others. We are still awaiting details from the marathon volunteer coordinator, but we know the Cure JM station is in a great location – the race finishing area (walking distance from our hotel). In previous marathons, Cure JM volunteers have passed out water and drinks to runners and helped clean up the racecourse. For Seattle, our first shift of volunteers will be needed at 5:30 a.m. to help set-up while the last shift ends at 2:45 p.m. Bring a hat, sunscreen, snacks and comfortable shoes!

 

Q. Can children volunteer for race day duty?

A.  Cure JM kids have been great helpers at previous race events, but as of now we are awaiting  details about any age restrictions for volunteering. We'll pass along the information as soon as we receive it.

 

Q.  Will conference attendees receive Cure JM T-shirts?
A.  Of course! All registered attendees and even virtual volunteers will receive a Cure JM T-shirt.  This year's shirt is bright orange (so we can easily identify our runners / volunteers) and can be personalized to show your support for a particular runner or JM child. You should receive your shirt in early June, unless you live outside the United States. Those attendees will be able to pick up their shirts on site. Runners: the shirts are a 50/50 cotton poly blend with some wicking ability so they should be comfortable enough to run in.

Q.   I have other questions about the event. Whom should I contact?
A.  For other questions, contact Rhonda.McKeever@curejm.com

 

 

Special Thanks to Team Tessa!

 

Tessa Shelvin

 

Does the name Tessa sound familiar? Perhaps you voted for her family's video to earn Cure JM a $6,000 donation by winning the Verity Credit Union Cartwheel for a Cause video contest earlier this spring.

 

Check out her winning video (upper right on the attached link) and acceptance speech at

http://www.veritymom.com/cartwheel-for-a-cause.

 

Tessa Shevlin is a 6 year old diagnosed with JM two years ago and her family was just starting with cartwheels.  They have formed Team Tessa, a group of more than 40 runners and many volunteers rallying around Tessa to support Cure JM at the Seattle Rock ‘n’ Roll Marathon and Half Marathon.

 

Deni Maxwell, Kim Miner and Amanda Tabill (Team Tessa members) 

 

Team Tessa has been training together, sharing running tips, planning a number of fundraising events leading up to race day and are an incredibly motivated group wanting to make a difference for Tessa and the entire JM community.

 

This group has remarkable creativity. In addition to the adults running, they have encouraged children to participate through a unique Kids' Marathon. The children track their distance with inexpensive pedometers and record their progress with a creative chart to earn stickers and special incentives at key milestones. Their goal? To travel the same distance as a marathon (26.2 miles) and have some fun along the way. On June 18, the same day as their parents run their longest training run before race day, their participating kids will meet and run their last mile of their marathon together as a team.

 

Cure JM thanks the Shevlin family, the entire Team Tessa and especially its captain, Kim Miner, for their passion and perseverance. We look forward to seeing you at the finish line and thanking you personally on June 25!

 

 

Secrets to Fundraising Revealed

For those of you running or serving as a virtual fundraiser for Seattle’s Rock'N'Roll Marathon & 1/2 Marathon, here are some fundraising tips from a family who raised over $50,000! 

 

1. Set a ridiculous target.  Setting a giant goal for yourself gets you motivated early, and as past experience shows, generally leads to overshooting your target.  Estimate the number of people in your personal, professional, and extended networks.  Make some assumptions of participation rate and average donation.  Do the math.
   For example:
   500 friends * 20% participation * $100 average donation = $10,000 realistic target.
   If raising $10,000 seems realistic, multiple by 5, and set your ridiculous target at $50,000. 
2. Setup your fundraising website on firstgiving.com/curejm– including a photo, so the people you hardly know might recognize you when they go to the link!  On the right side of firstgiving.com/curejm, you can browse other family’s Cure JM fundraising websites to get ideas.
3. Put together a list of EVERYONE you know – family, friends, current colleagues, past colleagues, neighbors, church, school, doctors, therapists, coaches, music instructors, hair dresser, drycleaner, coffee shop, etc. etc..Do not edit your list – but let people edit themselves, with the theory that you never know who might connect with the cause and want to make a donation. Often it is the people who you barely know, who make the largest contribution.
4. Send FOUR short emails to ask for donations – initial request, midpoint training update, final request for donations before the marathon, and one more final update after the marathon. Keep the emails short so that people don’t see your name in their inbox and think “OH NO”!  
5. In each email, include why you are running, how your training is going, and how Cure JM depends on personal donations to find a cure given the lack of pharmaceutical and government funding for rare diseases.  Make sure to include the link to your firstgiving website.  Also try to make the emails somewhat amusing.
6. Tailor the emails to people who have already given, and people who haven’t donated (yet!). Some friends may donate a few times because they want to help you hit your target!   In your final update to non-donors after the marathon, start with “it’s not too late to donate and fight JM, and here’s why: etc.” with a link to your firstgiving website in the first line. The final post-marathon email alone can raise thousands of dollars. Do not give up if you’ve asked a few times and someone didn’t respond – they’re probably just busy, not ignoring you.  How many times do you yourself intend to donate to someone’s cause, and then just simply forget to follow through?
7. Don't forget social media.  Post your training efforts with links to your firstgiving website on Twitter, LinkedIn, and Facebook.  You may also want to post a link to the Cure JM fundraising video at http://youtu.be/7l4R2ADkfuw or create your own fundraising video using Animoto like this one created by the Hume family: http://www.youtube.com/watch?v=fAAdqkpoojE.
8. Mail a letter with a fundraising form to all those you don’t have an email address for (e.g. all the neighbors). Include a handwritten card and return envelope. Pick fun bright colors for this so that it stands out in their mail and to make it fun for yourself when you check the mail everyday for your return envelopes!
9. If you have raised money in the past, also mail handwritten requests (letter & fundraising form) to past top donors.
10. Email thank you notes as immediately as possible. If possible, handwrite thank you notes to everyone – or at least, ask for an address if you don’t have one.  For all donations over $1,000, send a personal gift that you know the donor would appreciate like chocolates/champagne/red wine/steak. The thank you notes are very important.  The next time you fundraise, people will remember your thank you note, and be much more receptive to donating again.

 

$10,000 Online Raffle to Support JM Research

 

Interested in Holding Your Own Fundraiser?

 

Cure JM Foundation’s ability to increase JM awareness, to provide family support and fund research to find a cure depends upon fundraising by you – the members of the JM community.  Our goal for 2011 is to raise more than $1 million dollars.  This would be most money Cure JM has raised in a year in its 8-year existence. Please consider helping us by using one of the more than 50 fundraising ideas on the Cure JM web site. 

 

If you have another fundraising idea you would like to discuss, contact Cure JM at info@curejm.org or (760) 487-1079