Arthritis Foundation, Great Lakes

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Oct 2

Emerging Arthritis Investigators Conference

September 21, 2014

This weekend we had over 45 participants at Stonewall Resort in beautiful Roanoke West Virginia for the Inaugural Emerging Investigators Conference of the Great Lakes Region.

There were 16 research institutions represented at the conference from all five states of our region.  Both young investigators as well as seasoned mentors participated.

Featured speakers included Amanda Niskar, PhD, MPH, BSN the Arthritis Foundation’s new Scientific Director opened the conference on Friday with an inspiring presentation on the new goals for the Foundation’s Research Program.  She quoted her old boss, Bill Gates (yes, that Bill Gates) during her presentation and encouraged the researchers to “ not just think out of the box, BUT TO BLOW UP THE BOX!”

She encouraged all of the researchers to submit Letters of Intent for the new RFP that is open until the end of the month.  She encouraged creativity, collaboration and risk taking.  She also described the Arthritis Foundation’s role with research to be the “matchmaker, matching great ideas for research with funding”. 

Stacy Ardoin, MD from Ohio State University and Nationwide Children’s Hospital along with Marina Magrey, MD from MetroHealth Medical Center in Cleveland moderated the two day conference along with Nora Singer, MD also from MetroHealth Medical Center.  Dr. Singer expressed to the group during her presentation, “for research, you need to be like a dog with a bone!”

John Hardin, the ACL Study Director for the AF gave an inspiring dinner presentation on Osteoarthritis as an epidemic that we need to stop.  He talked about some very exciting studies that are taking place that could lead us to actually having a cure for OA in our lifetime. 

Marie Mancini, PhD from NIAMS at NIH gave a very thorough presentation on the different types of research funding available on Friday afternoon and then followed up later with  very specific opportunities for investigators who are early in their career.  She also participated actively in one of the break out sessions on Saturday afternoon where participants had many great questions for her. She was able to offer wonderful  guidance and direction.

Michelle Kahlenberg, MD, PhD from University of Michigan spoke about Navigating your First Faculty Appointment which was very enthusiastically received by the younger investigators in attendance.

She spoke about the need for “relentless positive action” with our research efforts!!

The Ohio State University was well represented by Wael Jarjour, MD and Nicholas Young, PhD (along with Stacy Ardoin).  They were highly engaged and remained well into the afternoon on Saturday as the conference was closing in a break out session with other researchers talking about new ways they could collaborate.  Dr. Jarjour is clearly a very enthusiastic leader of this team.

Rocky Tuan, PhD from the University of Pittsburgh spoke about some revolutionary work occurring with stem cell-based therapy and regenerative processes that had the attendees riveted. 

The Conference served as a fantastic opportunity to connect researchers and their work.  There were synergies taking place throughout the two days and significant amount of cross-fertilization that was inspiring to behold. 

Andy Zeft, MD from the Cleveland Clinic is working on some groundbreaking research on the Influence of the Environment on Juvenile Idiopathic Arthritis.

Sharon Bout-Tabaku, MD, MHS from Nationwide Children’s Hospital is investigating whether obese children will develop knee OA earlier. 

There was overwhelming consensus that this conference should be repeated annually.  The participants were all so appreciative of the opportunity to engage with each other. 

Dr. Walter E. Horton, PhD from Northeast Ohio Medical University spoke eloquently at lunch on Saturday about highlights in arthritis research at NEOMED and around the world.

Jul 7
2014 JA Conference Views!

2014 JA Conference Views!

Jul 7
Dr. Morgan-DeWitt & Janalee Taylor, MSN from the Arthritis Foundation Great Lakes Region host breakout session on PR-COIN

Dr. Morgan-DeWitt & Janalee Taylor, MSN from the Arthritis Foundation Great Lakes Region host breakout session on PR-COIN

Jul 7

Anne Jackson (Michigan) accepts the Patty Rettig Award for Professional Health Care Leadership

Anne is a registered nurse practicing in the division of pediatric rheumatology at the University of Michigan, C.S. Scott Children’s Hospital, Pediatric Multi-Specialty Clinic. Her work with patients and families has made a lasting impact on many lives. She worked to develop a Parent-to-Parent program to provide social and emotional support for families. To do this, she enlisted the help of “veteran” parents of children with JA  to serve as mentors to newly-diagnosed families. Anne’s work to establish this program at the hospital led to a broader initiative within the AF-Michigan market. Over the past 10 years, the AF-Michigan office has connected dozens of families a year through the Parent-to-Parent network. The program could roll out region-wide as early as next year. 

Anne has also championed the Arthritis Foundation-Michigan’s Camp Dakota, a residential summer camp for children with arthritis. Since the camp opened 11 years ago, Anne has generously cleared her schedule and volunteered as the camp’s health safety officer and lead nurse.

Beyond that, Anne has been a Walk to Cure Arthritis team captain for the University of Michigan, Division of Pediatric Rheumatology. Her personal fundraising efforts have resulted in more than $8,800 raised over the past 11 years.

Jul 7

Nolan Walker (Ohio) Accepts the Arthritis Foundation Dawn Hafeli National Award for Youth Leadership by Dawn herself.

Involved with the Arthritis Foundation since 2007, Nolan has shown exceptional courage and strength in his own battle with juvenile arthritis.

As a participant and volunteer for the Cleveland Walk to Cure Arthritis, Nolan’s numbers are impressive: In addition to having one of the largest teams (averaging more than 100 team members) he has raised more than $12,000 with his team, Nolan’s Walkers.

He has volunteered at our phone banks, created videos to encourage team donations, and used his creativity to plan popular basketball shoot-outs at school to raise funds for the Walk to Cure Arthritis.

In 2012 he accepted the responsibility of serving as the Cleveland Walk to Cure Arthritis Youth Honoree and exceeded his fundraising record and team participation record that year. A leader by example!

Nolan is on his way next month to Ohio University’s Scripps program for journalism following an outstanding high school career that included serving as vice president of student council as a senior and president as a freshman. He is a member of the National Honor Society.

Jul 7

Activities at the 2014 Juvenile Arthritis Conference!

Jul 7
Ann Palmer shares personal story with parents in the first session of the day reinforcing she understands and empathizes with the room “Both of my daughters have been diagnosed with chromes disease, one which manifests as arthritis with extreme joint pain… We hope you feel our refocus on JA …. Moving ahead as an organization with 4 core areas: research, advocacy (with an assertive focus), true help & support, and juvenile arthritis.” 
Ann Palmer reinforces her commitment to JA and that these families are what make us staff get out of bed everyday but we can’t do it alone, “People give to people, not to TV ads” encourages parents to “leave the mountain top and turn hope into action” by getting involved locally.

-Courtney Winnen

Ann Palmer shares personal story with parents in the first session of the day reinforcing she understands and empathizes with the room “Both of my daughters have been diagnosed with chromes disease, one which manifests as arthritis with extreme joint pain… We hope you feel our refocus on JA …. Moving ahead as an organization with 4 core areas: research, advocacy (with an assertive focus), true help & support, and juvenile arthritis.”

Ann Palmer reinforces her commitment to JA and that these families are what make us staff get out of bed everyday but we can’t do it alone, “People give to people, not to TV ads” encourages parents to “leave the mountain top and turn hope into action” by getting involved locally.

-Courtney Winnen

Jul 7

What a wonderful 4th of July at the Juvenile Arthritis Conference.  Started the day with Tai Chi and enjoyed meeting other families from our region at a luncheon.  Very informative and moving presentations. -Kaitlyn & Janet Eylicio

Jul 7

July 5th Blog

I would recommend a parent attend JA conference because it is such an eye opening experience. When your child is diagnosed you feel very alone. Coming to the conference lets you realize you’re not alone. The conference offers so much information about JA in general and they do a wonderful job with the breakout sessions for specific types of JA. Meeting other parents and hearing what they do to help their child cope with this disease was very informative. Parents who have been doing this for so many years provided so many ideas. I think meeting other kids with JA and specifically SJIA was eye opening for Mikaila. She knows she’s not alone that there are other kids struggling like she does. My favorite part was seeing Mikaila interact with other kids without being shy and engaging freely. I also loved all the information available and shared.

-Misty McCann-Clark

Jul 7

July 4th Blog:

Today I attended the opening general session I & II, and the relationship stress and parenting a non-JA sibling. It was so great to hear other parents stories. I didn’t feel so alone or feel like the things we are going through are so crazy. People who don’t have a JA child don’t understand the stress, frustration and even anger that is a big part of our lives. Hearing how far treatment has come brought me to tears thanking God for the miracles that have happened just in recent years. My non-JA kids are learning a little what it’s like for my JA child from kids their age. Mikaila is so excited to meet kids like her. She came out of session saying ” mommy I met a girl just like me. I didn’t think anyone else was like me!” Tomorrow I am looking forward to the breakout session for SJIA.

-Misty McCann-Clark