Community Advisory Board

Let me introduce myself. My name is Kara (Guzik) Backo and as a child I battled with juvenile dermatomyositis.

In 1973 at the age of six, I was the first child diagnosed with this rare disease at The Cleveland Clinic. From my initial diagnoses, my parents were told that I would not make it through the year. This dread and doom continued as I struggled with JDMS because there were so many unknowns. I had a pediatrician and an adult rheumatologist, but I never had a pediatric rheumatologist as this was not an option at the time. My overall treatment consisted of limited, short-term physical therapy and high-doses of prednisone consistently for seven years. According to the specialists at the time, this steroid was the only thing keeping me alive. At the age of thirteen, I was taken off prednisone to allow my body to go through puberty. Being on high-doses of daily prednisone for years was awful with all of the side effects, but being taken off of the steroid also caused many problems. My childhood and teenage years consisted of pain, feelings of not being like anyone else, and overall unhappiness. At the age of eighteen, I was told by my doctor that I had grown out of juvenile dermatomyositis because I was no longer a juvenile.

Never truly looking forward to a bright future due to my illness and self-conceived limitations, I held myself back from many things and many people throughout the years. It took me a long time to come to terms with me.

Unbeknownst to me, my future was very bright. At this stage in my life, I am a 4th Grade Language Arts and Social Studies Teacher at Woodridge Local Schools in Peninsula, Ohio. My husband and I will be celebrating our thirty year wedding anniversary in the spring, and I am the proud mother of two smart, successful, and very healthy young ladies. Today, I reflect back on my early struggles as an opportunity for personal growth and strength.

Jaclyn Casey is a Registered Dental Hygienist and mother of two children, Mason and Mallory. Her daughter, Mallory, was diagnosed with Juvenile Dermatomyositis (JDM) at age seven in January of 2023. 

Mallory was also born with a congenital heart defect and has endured two open heart surgeries at Duke Children’s Hospital. She is now a patient of Duke Children’s Rheumatology, undergoing treatment for her recent diagnosis of JDM. She continues to persevere despite her health challenges. We are thankful for the care she’s been provided through Duke University Hospital and hope she continues to respond well to her treatments. 

Jaclyn, along with her husband, Michael, have served the last 6 years on the committee of Hands for Hearts, a local non-profit organization in support of children and families affected by congenital heart defects. Jaclyn is happy to now be a part of the Advisory Board for JDM in hopes to raise awareness and find a cure.

Sophie, a senior at the University of Michigan, was diagnosed with JDM at age 16 after months of unexplained skin rashes and muscle weakness. 

Under the care and expertise of Dr. Turnier at Michigan Medicine, Sophie has gone from struggling to walk up stairs and getting dressed, to enjoying activities she used to like hiking and spending time outdoors. She has been able to participate in Dr. Turnier’s research and JDM-specific clinics.

She hopes to raise awareness for “invisible diseases” and make the voices of JM patients and parents a priority in future research, especially after receiving such great care at Michigan Medicine.

Chyllia Dixon is a Psychiatric Mental Health Nurse Practitioner based in Scottsdale, Arizona. She is passionate about integrating holistic health modalities into her work with medically complex patients. She is an editor and author of a best-selling psychiatric mental health nursing textbook and has authored many other publications with an aim to inform healthcare providers and transform the patient experience.
 
Chyllia has worked her way up the ranks from nursing assistant to nurse practitioner, so she has a keen understanding of the various front-line roles within the healthcare system. She loves sharing her knowledge and has spent thousands of hours teaching, precepting, and presenting to a broad range of learners. She is now owner and operator of Hazelwood Mental Health, where she provides psychiatric care to patients and student mentoring and new grad support to other psychiatric nurse practitioners.

Dr. Idokogi is a senior statistician in the Statistics and Decision Sciences – Immunology at Johnson & Johnson. 

She received her PhD in Biostatistics from the University of Texas Health Science Center at Houston School of Public Health with a minor in epidemiology after having acquired a bachelor’s degree in mathematics with a minor in survey methodology and concentration in economics from the University of Maryland, College Park. 

Dr. Idokogi was diagnosed with JDM in 2005 and lives  outside Houston with her husband and 9-month-old twins.  

She is looking forward to helping with this project to provide a patient perspective on the search for more effective medicines with fewer side effects.

Meishia specializes in healthcare billing, auditing, and insurance claims resolution, ensuring that patients can 

She became involved in juvenile myositis research because her daughter Keyani was diagnosed with juvenile myositis in 2017.  

Research and progress is deeply important to Meishia because she knows that children like hers need access to better treatments, with fewer side effects, so they can enjoy a better quality of life.  She also feels strongly that removing some of the “trial and error” from the current treatment plans will improve quality of life for children. 

Allison Korte is a data analyst/engineer living in Michigan.  She has worked in a variety of industries, including medical devices, packaged food, and, currently, automotive.  

Diagnosed with JDM at six years old, it took a year and consultations with seven doctors to finally be diagnosed.  From then she was treated with steroids for over ten years, in high school she went into remission but the JDM flared up again near the end of high school.  As an adult she switched from steroids to monthly IVIG infusions which have been keeping her stable.  She lives in Novi, Michigan with her fiancé and cat and currently spends her free time playing games with friends, planning movie nights, and wedding planning.

She looks forward to helping with this project as part of the Community Advisory Board to provide input on new treatments and better care.

Laila, a UC Berkeley junior, was diagnosed with JM at nine. After a terrible hip pain, she was hospitalized, but, and it took months of tests to diagnose JM.

Laila experienced first hand the lack of clear treatments for JM and the ongoing physical and mental toll that came with feeling like a burden to others because of having to avoid triggers like inflammatory foods and being outdoors. Her frustration was often directed at her doctors for not diagnosing her earlier and more clearly communicating the availability of new treatments like methotrexate that could have greatly reduced her symptoms but terrified her at the time. 

As a pre-med student and JM patient, Laila understands the importance of research and trials. She hopes her work will ensure doctors are available, thorough, and communicate clearly, and that patients have a voice in their treatment

Abby Printz is a Physician Assistant (PA), and I graduated with my Master’s degree from Gannon University in 2020. 

After working as a Hospital Medicine PA for 2 years, I am now blessed to work as a Pediatric Rheumatology PA with the same team who treated me for JM as a child. 

Outside of work, I enjoy watching movies (especially Disney movies), playing with my two cats (Simba and Pumba), spending time with family/friends, swimming, and mentoring.

She hopes to be part of finding better treatments and care for juvenile myositis.

Rohan is a member of Cure JM’s Young Adult Advocates Council. He is a 4.0 student at Eastview High School in Minnesota. He is on the speech, debate and tennis team, tutors younger students, and has played the piano, trumpet. He is planning a career in science or healthcare.  

Rohan looks forward to participating and providing the perspective of a newly diagnosed patient.

Todd, his wife Veronica, and daughters, Natalie and Clara live in Toronto, Ontario. CureJM has been an incredible source of knowledge and support for the family since Natalie was diagnosed with JDM at age 9. 

Active supporters of Cure JM, the family has taken a unique approach with their fundraising activities. Clara and Todd have raised money with their Pedal to Cure JM rides (~1700 miles along the West Coast of the US). 

With 20+ of experience working in the technology industry, Todd is incredibly excited about the potential for AI enabled research like that being funded by the Chan Zuckerberg Initiative to accelerate the fight against rare diseases like JM while ensuring the voices of the community are well represented in the work.

Hello my name is Terrell Spottsville and I currently go to Kennesaw State University and will be graduating in the summer of 2025. I am studying mechanical engineering, and I am currently pursuing my passion in technical sales with a company called Eaton, who is an electrical distribution product manufacturer, who I also plan on working for after I graduate. Outside of work I like to play basketball and workout, while also investing and taking business adventures.

Annalise is an actuary in Cincinnati, Ohio.  She studied mathematics at Centre College in Danville, Kentucky.  

Annalise was diagnosed with juvenile dermatomyositis at 8 years old.  Through her diagnosis, her family was introduced to Cure JM and Annalise is currently on the Cure JM Advocates Council

She looks forward to being part of the Community Advisory Board to help advance better treatments.

Alexis Connor is a registered nurse who has worked in adult oncology for 15 years. She is currently a stay-at-home mom to five lovely children. 

Alexis became a member of Cure JM in 2016 when her oldest daughter, Nylah, was diagnosed with JDM at the age of seven. After months of seeking care and treatment, the family relocated from Florida to North Carolina, where Nylah has made a complete turnaround thanks to hard work, faith, and the expertise of Dr. Reed and Dr. Reed and Duke’s collaborative care. Although Nylah still receives treatment, she is back to being a teenager, where she enjoys swimming, playing instruments, and hanging out with her friends. 

Alexis is excited to be a part of the Community Advisory Board for this initiative that is close and dear to her heart. She looks forward to contributing to the research that will help move us closer to a cure for JM.

Susan became involved in Cure JM in 2019 when her daughter was diagnosed with JDM.  A member of Cure JM’s National Leadership Council, Susan is passionate about making a difference for families dealing with juvenile myositis.

She looks forward to being part of helping researchers understand the patient and parent perspective and why better treatments are important to families.