This year’s family conference was full of motivational, informational, and educational presentations! We cannot thank all of our impeccable presenters enough for taking the time to enrich us with their wisdom and insight. Take a look back on all of the content we covered together this year… 

Dr. Russel Butterfield opened the conference with a warm welcome to patients, families, participating organizations, and our generous sponsors.

Then, Dr. Bob Weiss gave us a break down of the history of FSHD and genetic discoveries, and how that has impacted the work that happens within the Utah Program for Inherited Neuromuscular Disorders.

Following Dr. Weiss, we received heard a brief announcement from Catherine Raney and Stephanie Sokolowski from the University of Utah Development Office about ways that we can show gratitude within our community. 

This announcement was followed by an insightful and inspirational talk from Keynote Speaker Chris Jones, father and found of Mitchell’s Journey, who vulnerably shared his family’s experience with Duchenne Muscular Dystrophy. The key topics he aimed to cover included “The Deeper Meaning of Hope, When Hard Things Happen (short overview of Mitchell’s story), Confronting the Big Question, A Key to Happiness, The Healing Power of Gratitude”. If this talk leaves you wanting more, Chris has found ways to capture his family’s evolving story at:

After our opening session and a short lunch break, we transitioned into our first round of Breakout Sessions. Each of the session titles and a brief description of what each contained are provided below!

Protection and Advocacy – What Does That Mean for You?

Nick Jackson is a supervising attorney at the Disability Law Center. He gave this presentation alongside Katie Cox, the DLC’s first Medical-Legal Partnership Attorney. The DLC is Utah’s Protection & Advocacy Agency, which means they are mandated to investigate and enforce federal laws protecting people with disabilities. Nick and Katie sought to explain the DLC’s services, and how legal services can supplement or improve medical care outcomes.

An Overview of Vocational Rehabilitation Services

Aimee Langone has worked with people with disabilities in a variety of capacities for over 20 years. Aimee is currently employed as the Transition and Supported Employment Coordinator with the Utah State Office of Rehabilitation. She completed her Master’s Degree in Rehabilitation Counseling from Springfield College and has worked as a Vocational Rehabilitation Counselor in the states of GA, OH, and UT, serving a transition client base in all three states.  Aimee has provided case management, conducted vocational evaluations, and performed job coaching for both youth and supported employment in a Community Rehabilitation Partner setting.

Advocacy, Resources, and Government Programs 

Care & Clinical Services Specialist, Taylor Berhow, CSW, MPA, gives a presentation on Advocacy, Resources, and Helpful Government Programs in this Breakout session that is jammed packed with useful Q&A from audience members throughout. Taylor overviews Social Security systems, how they apply to us, how they are funded, and ways that we can tap into them as resources. Just a few systems that she highlights include: DPSD, Medicare, and Medicade in Utah.

Parents Helping Parents

Gina Money from The Utah Parent Centers gives a resourceful presentation, with the help of Tina Persels, to describe the mission and vision of The Utah Parent Center and programs they provide to families through the center. Specific Workshops they touch on throughout the presentation include: IEP process support, 504 services, help with transitions from school to adult life, bullying prevention, stress management, tools for constructive communication skills, health insurance support, and more!