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Cure JM’s 10th National Conference and Fundraising Event
120 Families Make Austin, Texas Event a Success
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Cure JM Medical Advisory Committee members Dr. Ann Reed, Dr. Adam Huber, Dr. Lauren Pachman, and Dr. Lisa Rider answer family questions during the Conference General Session.
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In February, Cure JM held its 10th National Family Educational Conference and Fundraising Event.
This was our largest conference ever, with 120 families attending -- including 60 grandparents, over 80 teens and young adults, 75 children, and over 200 parents.
40 medical professionals also participated in one-day educational event to share the latest advancements in JM research and treatments.
Families enjoyed time to connect with other families as well as educational sessions on a wide-variety of topics related to Juvenile Myositis research and care.
Families also had the opportunity to participate in a research study and provide input to researchers who wanted to hear directly from families. More information is coming soon on how families can participate in this research from home. View the complete Conference Recap here, including photos, videos, and educational content.
Conference Recap from Jim Minow
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Executive Director James Minow
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Click here to read the full conference recap from Cure JM Executive Director, Jim Minow.
"There were many highlights, and among the most important were the connections that families were able to make with many of our presenting doctors and researchers," says Jim. "One of the goals of the conference is to enable families to interact with the some of the best juvenile myositis clinicians in the world."
"The Conference celebrated the triumph of a "can do" approach to the challenges of living with JM. Nowhere was this more exemplified than through the children themselves, opening the awards banquet with a most wonderful heart and spirit in their special rendition of "Fight Song." Click here to view the video.
View Videos of Conference Sessions
For the first time, recorded sessions of the conference can be viewed here.
"We are very excited to be able to offer recordings of conference sessions," says Kristine Alderfer, Cure JM Board of Directors and Chair of the National Conference. "It is an important step forward for us to be able to share this valuable educational content with all Cure JM families."
The Cure JM National Family Conference in Austin, Texas was live-streamed and recorded for the first time thanks to the extraordinary generosity of Cure JM grandparents Bruce and Judy Leetz. Thank you, Leetz family!
Inaugural Texas Walk Strong to Cure JM™
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Over 500 walkers came out for the Inaugural Central Texas
Walk strong to Cure JM™
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Over 500 walkers came out for the Inaugural Central Texas "Walk strong to Cure JM". Organized by a team of parents led by Walk Chair April Duley, the event was a smashing success.
"April Duley and the entire Texas team did a phenomenal job," said Jim Minow, Cure JM Executive Director. "Raising over $200,000 was an outstanding accomplishment."
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After walking one mile through the Lakeway City Park families arrived back at the walk site for fun, food, face painting, games, and awards.
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Cure JM Foundation launched its Walk strong to Cure JM™ program in 2016. At these events, families, friends, neighbors, and other supporters in the local community band together to raise money for JM research through a family-friendly walk.
We look forward to seeing all families, friends, and supporters at an upcoming Walk strong to Cure JM™ event soon. Visit www.curejm.org/walkstrong to learn more or start an event in your community.
Contact lauren.alvord@curejm.org to learn more.
Race Highlights from the Austin Marathon
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Team Cure JM raised over $40,000 by participating in the Austin Marathon.
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Over a dozen Cure JM runners participated in Team Cure JM in the Austin Marathon.
Cure JM families participated in the 5k or half-marathon to raise over $40,000 for Juvenile Myositis research.
Thank you to Team Cure JM in the Austin Marathon for making a difference.
"JM research is made possible by Cure JM families stepping forward to get involved," says Cure JM Chairman Rhonda McKeever. "The success and impact of Cure JM is bestowed on all of us."
Grandparent and Extended Family Session
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Grandparents are an important part of Cure JM, offering support to their families and participating in the pursuit of a cure for their grandchildren.
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Over 70 Grandparents and Extended family members joined the Grandparent Session at the conference.
"This session was an exceptional chance for the grandparents to share ideas and learn from each other," said Cure JM Grandparent Representative Laurel Krider.
"Grandparents play a crucial role in supporting their families and supporting Cure JM's mission."
Some of the many ways that Grandparents shared that they are involved in supporting their families and Cure JM:
- Participating in the care of their grandchild with JM
- Caring for siblings during their grandchild's appointments
- Letting your child (the parents) vent to you -- just listen
- Raising funds for JM research by sending a letter to friends and family -- Grandfather Walter McKeever gave many tips and tricks on how to send a letter. Contact shannon.malloy@curejm.org for a custom letter that your family can send.
Thank you to all of the grandparents who attended and are involved from home, your commitment is making a big impact.
To learn more about how grandparents can get involved contact shannon.malloy@curejm.org
Kids' Fun Camp at Cure JM's National Conference
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The kids all had fun while their parents attended educational sessions.
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Over 70 Cure JM kids and siblings, age 3-10, came together for a "Camp JM" - themed Kids' Fun Camp.
The camp was taught by a team of elementary school teachers led by a Cure JM aunt, Meagan McDevitt.
"The first purpose of the Camp JM was to give the kids an unforgettable day of fun and new friendship," said Meagan.
"And we did that! We all had a blast while their parents were at the educational sessions."
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Over 70 JM kids and siblings enjoyed the supervised Kids' Camp.
Making new friends who understand me!
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Providing the kids an opportunity to connect and make new friendships with kids just like them is an important part of the Cure JM conference. And for the JM patients and siblings who attended the kids' camp, these new friendships often last the whole year through.
"The best part of the conference was the ability for kids to connect to other JM kids," said one mother. "We look forward to staying in touch with the new friends we made this weekend."
For the parents, grandparents, physicians, and researchers one highlight of the weekend was watching the kids perform a song and dance to the inspirational song "Fight Song" by Rachel Platten.
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Teen, Tween, and Young Adult Highlights
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Over 70 teens, tweens, and young adults came together for the weekend, many participating in the one-day Teen and Tween Photography Workshop
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Over 70 teens, tweens, and young adults came together to participate in their own events including:
- A Transition to Adult Care Workshop
- A Teen Photography, Art, and Multi-Media Workshop
- A Teen-Only Session where teens could connect and share with each other
- A Siblings Matter session where teenage siblings could connect and share their experiences
- A Teen Panel where teens shared their experiences and answered questions from parents
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A surprise visit from Brainy Smurf!
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"My twelve-year-old daughter attended sessions just for teens, met other teens, and learned from physicians how to take care of her own medical needs," says one dad, first-time attendee Chris Bokis "The teen sessions were invaluable."
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Upcoming Events Scheduled Across the U.S.
Visit www.curejm.org/events for more information about upcoming events in your area.
For more information about starting an event in your community contact shannon.malloy@curejm.org
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Congratulation to these Cure JM families
At the conference in Austin, several Cure JM families were recognized for their exceptional service and commitment to advancing Cure JM's mission.
"We are grateful to all Cure JM families and friends who dedicate their time to raising the much-needed funds for JM research," says Cure JM co-founder Shari Hume. "Without you, our progress would not be possible. I am humbled and inspired by the unrelenting commitment, the passion, and the grit of our community to find better treatments and a cure. Without a doubt, 2017 will be a year filled with tremendous hope and significant progress in research."
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April Duley receives her award
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Congratulations to these "Cure JM Heroes":
- April Duley
- Kevin and Doreen Coffey and family
- Meagan McDevitt
- Sharon & Martin Ortega and the "Mega Ortegas"
- Michelle Best and Family
The Doria and McKeever Families
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And congratulations to the following award winners:
- Denise Koch - Cure JM Excellence in Advocacy Award
- Morgan Gleason - Cure JM Youth Ambassador Award
- Julie, Justyn, Tessa, and Lochlan Shevlin - Mason’s Miracle Award in memory of Mason Smedley
- Dr. Ruy Carrasco - Cure JM Physician of Excellence Award
- Dr. Lisa Rider - Lifetime Achievement in Juvenile Myositis Research
- Denise Doria, Nic Doria, and Walter McKeever - Cure JM Champion Award
- Rhonda McKeever - Legacy Leadership Award
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Marge Coffey and Family |
And a special thanks to Cure JM grandmother Marge Coffey, who made possible Cure JM’s investment in a 3-year drug development program at National Center for Advancing Translational Science (NCATS). The NCATS team will screen hundreds of thousands of potential drugs, as well as existing drugs for other diseases, and perform follow-up studies on the most promising drugs. The expected result is a short list of new and repurposed drugs that have the potential to improve the prognosis for JM.
Thank you again to these families and the hundreds of families who are working tirelessly to support each other and advance JM research.
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