Cure JM Foundation Newsletter
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FEATURED STORY
National Educational Conference and Fundraising Event - Baltimore, Maryland 10/11 - 10/13
Cure JM Foundation brings its National Educational Conference and Fundraising Event to Baltimore, Maryland, October 11th to 13th for a spirited weekend of knowledge sharing and camaraderie focused on our unified effort to relieve children from the pain and suffering of this rare autoimmune disease.
The weekend's events will allow you to interact with medical experts and other JM families in a casual atmosphere that fosters learning and friendship. These events are:
- A welcome reception, with food and drink, where conference participants can meet one another.
- Intimate breakout sessions about coping with real life issues facing JM patients, families and caregivers.
- An educational forum with experts from Children’s Memorial Hospital in Chicago, The Mayo Clinic and the National Institutes of Health discussing progress in finding better diagnostic tools and treatments that may ultimately lead to a cure.
- A recognition dinner to celebrate our attendees and their efforts to further JM awareness and research.
- The Under Armour Running Festival, featuring many Cure JM runners and volunteers participating in a events from a 1-mile kids' fun run to a full 26.2-mile marathon.
To make the most of the weekend, we encourage all attendees to be active participants in raising money for Cure JM and awareness of our purely volunteer effort to fight this potentially devastating childhood illness. Here's how:
RUN!
This year has options for all sorts of runners – young to young-at-heart, beginner to road veteran. You can enter a full marathon, be part of a marathon relay team (four runners split up the distance), run a half marathon or do a quick 5K. Kids 12 and under can participate in a 1-mile race. Our goal is to have over 100 Cure JM charity runners which will grant us a charity tent in Celebration Village located near the race finish. If you are not a runner, ask friends, family, co-workers, doctors, nurses or others who may be interested to join our runners to raise money and awareness.
Do NOT register on the Under Armour Running Festival website. As an official charity, Cure JM will collect all fees and pass on directly to the race organizers when you register at www.firstgiving.com/curejm.
VOLUNTEER!
Assist at race events in Baltimore or be a fundraising "virtual volunteer" and raise funds without leaving home. However, the bigger our presence in Baltimore the better, so please invite friends, family and others to come out for our cause. Volunteering on race day is always an exhilarating experience that really raises Cure JM's visibility and inspires others. Register at www.firstgiving.com/curejm.
FIND SPONSORS!
To ensure that our conference fundraising goes towards research, we are looking for corporate or family sponsors to cover the cost of the event. If you or your company would be interested in becoming a sponsor or helping us find sponsors, email Rhonda.McKeever@curejm.com.
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This weekend will have a profound impact on the success of our organization's work. Similar events held over the past five years have raised nearly $2 million – money that went almost exclusively (roughly 98 percent) to pay for research personnel, equipment and studies dedicated to treating and curing children with JM. It can also have a great effect on those who attend, as you will read in the quotes below from past participants.
Please join us for a weekend in Baltimore and help make this event the biggest, most successful event ever. Your active involvement will ensure this and bring us miles closer to a cure!
Please share this information with anyone else you think may be interested in running, volunteering and/or joining our conference.
Conference Schedule (Updated March 2012)
Thursday, October 11th
10am - 9pm:
Race Packet Pick-up for ALL Runners
(Baltimore Convention Center / 1 block from our hotel)
6 - 9pm:
Informal gathering of JM families at Hilton Baltimore hotel
Friday, October 12th
10am - 9pm:
Race Packet Pick-up for ALL Runners
(Baltimore Convention Center / 1 block from our hotel)
9am – 12:30pm:
Educational Break-out Sessions
led by JM families and special guests at Hilton Baltimore hotel
12:30 – 2pm:
Break / Lunch
2pm:
JM educational meetings at Hilton Baltimore hotel -- research updates and a Question and Answer panel session with elite group of pediatric rheumatologists / JM experts
6 - 9:30pm:
Group Dinner and Awards Ceremony at Hilton Baltimore hotel for all participants (note: babysitting will be available for kids, 3 years and older, during the meetings for JM family attendees)
Saturday, October 13th
TBD am:
Volunteers arrive at water station for The Underarmour Running Festival (expect very close to hotel)
8 - 9:45am:
All races have different start times. All races start and end very close walking distance to our hotel.
Conference Hotel Information
Be sure to book your hotel early to get the Cure JM special rate!
We are holding the Cure JM events at the Hilton Baltimore hotel.
Address:
401 West Pratt Street, Baltimore, MD (3 blocks for Inner Harbor area)
Reservations:
Call 1 (888) 370-0980
or local # of 1 (443) 573-8707
Cost:
- Special Cure JM room rate of $159 per night + taxes (must mention our group to get the discount)
- For phone reservations
- Group Name is: Cure JM Foundation
- Group Code: CUR
- Located conveniently downtown – only 3 blocks to Inner Harbor and many local attractions
- Hotel is within a block or two of the race start and finishing areas
- Very close to Baltimore Convention Center (health expo and race packet pick-up)
- Indoor heated pool, hot tub and fitness center
Reservation Instructions:
- Go to: http://www.hilton.com/en/hi/groups/personalized/B/BWICCHH-CUR-20121007/index.jhtml?WT.mc_id=POG
- Under Click on “Book A Room” and type in your arrival and departure dates
- The group code will automatically populate online
- For phone reservations
- Group Name is: Cure JM Foundation
- Group Code: CUR
- Click on Check Availability and your group information will pull up
- Follow remaining directions to complete your reservation. A room has not been confirmed unless you receive a confirmation number.
- If a message appears that rooms are no longer available in the group block, please send an email to Rhonda.Mckeever@curejm.com. Please include the following: your name, arrival date, departure date and daytime telephone number.
- Discounted rates are available only to our registered Cure JM Participants (Runners, Walkers and Volunteers) and their families/friends coming to participate and who register early, as we have a limited number of rooms.
Past Conference Participants' Experiences
“Spending time with JM families at the Cure JM fundraiser / educational event was wonderful! Emily had the opportunity to meet girls her age with the same concerns and problems she faces. Having her spend time with children who really understand how she feels was priceless! Having the opportunity to have more than one top ranked JM specialist to address the parents’ concerns was just remarkable. We feel very fortunate to be a part of this JM community!” - Lori, mother of JM child
"I got to meet kids who had JDM, just like me! It was so much fun!"
- Gracie, age 14, diagnosed 4/07
“Relatives, friends, neighbors, teachers, healthcare workers, etc. -- all who hated to see my daughter suffer with JDM were motivated to give towards a cure, so that someday there will be! That's what made fundraising so easy!” - Annie, mother of JM child
"Going to the Cure JM panel discussion and gathering in Washington D.C. was a long trip from Seattle, but well worth the effort, time and expense.I felt very supported by all the other JM families dealing with this difficult illness. I learned a tremendous amount from the panel of experts." - Suzannne, mother of JM child
“Every time we participate in a Cure JM event, it's been magical for us in many ways. My child makes new friends, who can relate to the same things he is experiencing. He gains more confidence and he feels less alone knowing that there are others just like him. My husband and I learned about the latest studies and treatment from leading doctors and researchers. When we tell people about Austin's disease, often they ask how they can help. At first we were hesitant about fundraising, we were so pleasantly surprised that many family and friends welcomed the opportunity to be a part of helping raise fu nds towards research for a cure.” - Jackie,mother of JM child
"Joining Cure JM in Washington DC for the Marine Corps Marathon was the best thing I did in 2007. It was a great way to prove to myself that I was bigger than JDM as I crossed the 10K finish line with my mom." - Chyilla, young adult with JMAs
Small Town of Rockdale, Texas Raises $42,000+ for Cure JM
Rockdale, Texas is no ordinary town. Set 60 miles northwest of Austin, this town of 5,500 has once again come together to support Cure JM. On March 24th, over 800 residents of the town gathered for the 2nd Annual Cure JM Fundraiser in honor of 7 year old Janey Cleveland.
Janey Cleveland
After months of hard work and planning, Janey’s mom, Lindsay, together with her family and friends, hosted the hugely successful event which included bbq plates, Cure JM shirt sales, a raffle, a silent auction, a live auction, and a live band.
Lindsay Cleveland
There were some especially emotional moments throughout the day that brought the crowd together. Janey’s grandmother sang a beautiful song dedicated to Lindsay and the other JM mothers in the audience. Also, Janey bravely got up on stage with her cowboy boots and cowboy hat and belted out Country Strong with her grandmother.
The audience also got to learn about JM through a video on Janey’s journey featuring many smiling JM children holding up “I Need a Cure” posters, as well as from hearing personal stories from the JM families in attendance.
Lindsay’s boundless energy and optimism made the whole event truly special for everyone.
Congratulations on a very successful event!
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