Cure JM Foundation Newsletter
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FEATURED STORY
Register Now for Annual Conference and Fundraiser 7/19-7/21 in Chicago
JM mom runners: Kelly Gaither, Erika Bradford, and Suzy Clement
As you make your summer plans, please put the Cure JM Annual Conference and Fundraising Event at the top of your list! This year’s event will be held in Chicago on Friday July 19th - Sunday July 21st in conjunction with the X-Sport Fitness Rock’n’Roll Chicago Half Marathon and Mini Marathon. The conference promises to be our best yet, as we celebrate our 10th year as an organization, reflecting on our humble beginnings and looking forward to a promising future for our JM children!
The conference kicks off on the evening of Friday, July 19th with a family-friendly Welcome Reception where participants have the opportunity to get to know one another. Connecting with other families going through the same experiences is one of the best parts of attending the conference.
On Saturday, July 20th, there will be small group break-out sessions in the morning on coping with real-life issues facing JM patients, families, and caregivers, including a special session specifically for grandparents. Saturday afternoon, experts from the Lurie Children’s Hospital of Chicago and the NIH will discuss the progress made in finding better diagnostic tools and treatments.
Saturday evening, we will have a recognition dinner to celebrate our extraordinary volunteers and their efforts to further JM awareness and research.
We will have free childcare available all day on Saturday, so the children will have a chance to get to know each other while participating in fun activities, and the adults can focus their full attention on the sessions.
Sunday, July 21st, is race day, where you can either a) run/walk the 3 mile mini-marathon or the 13.1 mile half marathon OR b) volunteer with our team on race day! Volunteers and Mini-Marathon participants will receive a free Cure JM t-shirt, and Half Marathon participants will receive a free Cure JM technical running t-shirt. We hope to spread awareness by inundating Chicago’s streets with our Cure JM members garbed in brightly colored Cure JM t-shirts!
We ask ALL participants to seek sponsors to help us raise funds for Cure JM research, with a minimum of $250 raised (or donated) per family. If that sounds daunting, it is much easier than you think, with several families raising more than $10,000 every year. When you register, we will provide you with a fundraising webpage that you can easily customize, and with just a few email blasts to your family, friends, and acquaintances, you will be pleasantly surprised – and feel empowered - at how much your family can raise for research. See fundraising tips below.
For those of you who are unable to attend the conference in person, we also have the virtual volunteer option available again this year, where you can still contribute to the cause from home by setting up a virtual volunteer fundraising webpage and sharing your story with your personal network.
Register NOW at http://www.curejm.org/chicago/
We're Hiring! Fundraising & Ops Coordinator
The Cure JM Foundation has grown over these last 10 years to the point now where we need to hire a part-time employee to support the efforts of our otherwise all-volunteer organization, or risk limiting our future growth.
If you or anyone you know is interested in applying for our newly created Fundraising and Operations Coordinator position below, please send cover letter, resume, and at least 3 professional references to info@curejm.org by June 7th, 2013.
Job Title: Fundraising and Operations Coordinator
Reports to: Cure JM Co-Founder and Board Member – Shari Hume
Classification: Part-time, exempt employee
Location: Flexible and would be a work-at-home position. Travel is very limited and must be approved in advance, if expected to be reimbursed by Cure JM Foundation.
Hours: Flexible schedule based on mutual agreement of 25 – 30 hours per week, on average, with availability during regular business hours for at least 4 days a week.
Compensation: Competitive base salary based on commensurate experience, hours and work location. This position is salaried role and not eligible for overtime.
Benefits: Position is eligible for 2 weeks of paid vacation every year. Vacation will be prorated in first year of employment and is earned and accrued over the calendar year every subsequent year of employment.
This part-time position is not eligible for health care or any other benefits.
This position will be provided a company computer and will be provided reimbursement of approved (in advance) of limited business expenses.
Job Summary:
Responsible for the general oversight of fundraising events (approximately 75% of the role) and help support the day-to-day operations of Cure JM Foundation (approximately 25% of the role).
Qualifications:
- Strong independent, project management skills managing complex and multifaceted projects.
- Demonstrated results in managing fundraising events and non-profit operations.
- Excellent verbal and written communication skills, with exceptional attention to detail.
- Ability to coach and inspire fundraising efforts, while ensuring appropriate compliance.
- Proven computer skills – ability to learn online administration tools (Donor Perfect, Greater Giving, etc) and proven experience with Microsoft programs (Word & Excel).
- Personal qualities include: self-motivated, high integrity with credibility, and a commitment to and passion for helping Cure JM Foundation.
Click Here for More Detailed Duties and Responsibilities
Again, the application deadline is June 7th, 2013. Send cover letter, resume, and at least 3 professional references to info@curejm.org.
Open Letter to Grandparents
from Pauline Lenz, New Advisory Council Member & Grandparent Rep
Pauline Lenz (aka Ninja Nana) with grandson Kinser
Hmmmmmmmm…. “Grandparent Rep” for Cure JM Foundation…
When I was asked to fill this position on the Advisory Council, I had about 30 seconds of self-doubt creep in. Seriously, I think being Ninja Nana surely qualifies me! Let me give you a little background about myself. My name is Pauline Lenz, and my almost 7-year-old Grandson Kinser has Juvenile Dermatomyositis (JDM). I am known also as Ninja Nana, because Ninjas never give up. Helping the Cure JM Foundation has become my crusade.
On August 6th, 2010, my entire life changed in a one-minute phone call from my daughter. I always heard your entire life could change in a second; little did I know how true that statement was. She had an appointment that day with a pediatric rheumatologist, after some blood work done by his pediatrician came back with some scary high levels in certain areas.
Kinser had a rash, which we all thought was eczema, even his pediatrician. He had it for so long, we were pretty used to the red face and all of his joints being covered with it. Sometime in the early part of 2010, we all started noticing he was tired more often than not, which was not like him at all. In the spring, he started having difficulty getting up from the floor without assistance, so my daughter made an appointment with his pediatrician. Tests were done and she was referred to the rheumatologist. Her phone call that afternoon was the worst minute of my life; he had a life-threatening disease and needed to be hospitalized immediately to start treatment.
Yes, I wanted to fall apart and stay there. That was not an option, as I needed to be strong for both Kinser and my daughter. So, our entire family began a journey with the both of them, and we have never looked back.
Being a grandparent means you step up and help when needed, you pull all of those skills that you learned as parents, and become another support system and an extended caregiver. You can be sad and cry, this disease is horrible to say the least, and the medications taken to help save their lives have side-effects that are as bad as, if not worse than, the disease itself. So, you step up and help.
If you are a grandparent, you may be asking yourself, how can YOU help? I actually did a little survey with some parents of JM children and here are a few things they want from the grandparents.
- Learn as much about Juvenile Myositis as you possibly can, so you can listen and understand what your grandchild is going through. Visit www.curejm.org. Get the book “Myositis and You” and read it twice. So much information in it, I consider it my best resource.
- Find out what treatments and medications they are taking and do some research on them to find out the side effects and any long-term issues with them.
- This is a BIGGIE! Understand the seriousness of JM please. This is not a cold or the flu; it’s not going to go away, when we say “No Cure” we mean it. Your grandchild is going to have days where they seem to be “fine/normal/healthy.” Trust me, this disease has no rhyme or reason and can rear its ugly head in hours.
Those are just a few things parents have mentioned; we will talk about more as time goes on. I think what they are saying is simple: they need to know you understand how much JM has changed the entire dynamics of their family. Forever, until we find a cure. Which brings me to something I think would be very beneficial to all grandparents.
Consider attending the Cure JM Conference in Chicago, Illinois, July 19-21st this year! I went to my first conference last October in Baltimore, and walked away with more information than I could ever hope to find. The conference is filled with love and hope for our children, which is what we all need. If you attend or not, consider making donations to the Foundation in the name of your grandchild to help us find a cure!
Every little bit helps, and our doctors work so hard to figure this darn disease out. Visit http://curejm.org/donate/index.php to donate online or to get information on mailing in a check or money order.
In fact, I challenge every grandparent to donate before the conference! Whatever amount you can, and we will try and track those donations. Remember, you can collect from your friends and groups, and make a lump sum donation. Think about how that $25 donation just may be the money that finds the cure.
Love and hug your grandchildren, in fact, call their parents today and ask what you can do to help. Don’t take no for an answer, maybe just take them out to lunch or dinner, and find out how this disease is affecting them.
Till next time, love hugs and strength from Ninja Nana
(AKA Pauline Lenz)
Questions? Comments? Contact NinjaNanaCureJM@gmail.com
Are you a member of Team JM? Not sure what Team JM is? Team JM is our nationwide network of grassroots volunteers dedicated to finding a cure for JM. When you registered on Cure JM’s patient registry, there should have been an option for joining Team JM.
If you, or other members of your extended family - grandparents, uncles, aunts, cousins, siblings - or close friends would like to join Team JM, please go to our Team JM page. There, you will learn about how you can help our cause.
Be sure to officially join Team JM so that we can help get you started, and you can stay informed by signing up for our newsletter.
Trying to fight a rare disease, we need all the volunteers we can get, especially given many of our JM families are so overwhelmed with caregiving, they find it difficult to volunteer. Some of our most loyal volunteers are friends and non-immediate relatives of a child with JM. If you or other family and friends can help, we strongly encourage you to sign up.
Email info@curejm.org if you have questions.
Fundraising Tips for Annual Fundraiser
For those of you running or serving as a virtual fundraiser for the XSport Fitness Rock'N'Roll Chicago Half Marathon & Mini Marathon, here are some fundraising tips from a family who raised over $50,000!
- 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. - Register for the conference and set up your fundraising website at http://curejm.donorpages.com/ChicagoHalfMarathon/–include a photo, so the people you hardly know might recognize you when they go to the link!
- Put together a list of EVERYONE you know – family, friends, current colleagues, past colleagues, neighbors, church, school, doctors, therapists, coaches, music instructors, hair dresser, dry cleaner, 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.
- 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”! Check out these sample communications.
- 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 donorpages fundraising website. Also, try to make the emails somewhat amusing.
- 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 donorpages fundraising 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?
- Don't forget social media. Post your training efforts with links to your donorpages fundraising 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. As Facebook Friends donate to your cause, thank them publicly on Facebook to help remind your other friends to donate, too.
- 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, donation form (pre-filled with your honoree's name for "In Honor Of" and "2013 Annual Conference" for the "Occasion", 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!
- If you have raised money in the past, also mail handwritten requests (letter & fundraising form) to past top donors.
- 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.
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