The 2019 Congenital Muscle Disease Scientific & Family Conference

 is hosted by three rare disease nonprofit organizations:

Cure CMD
Team Titin
A Foundation Building Strength

 

Copyright © 2019

Please direct inquiries to:

Cure CMD

19401 S Vermont Ave

Suite J100

Torrance, CA 90502 USA
 

scifam@curecmd.org

Bonus Sessions

2019 SciFam offers more than just research and clinical information! Check out these bonus sessions designed to promote social interaction and quality of life.

Sessions are listed by date and time. Some sessions will be repeated. All sessions are included with conference registration unless otherwise noted.
Session times have moved around a bit on Sunday, please be sure to check for updates!

Friday, July 26

Come pick up your badge and your swag bag as we kick off the Family Conference!

This Session is For: Everyone!

Session Times: Friday, 3:00-6:00 pm

Renaissance Hotel 2nd Floor - Explore

Registration Check In

After you've stopped by the registration desk, join your community for some drinks and appetizers as we welcome you to Chicago!

This Session is For: Everyone!

Session Times: Friday, 3:00-6:00 pm

Renaissance Hotel 2nd Floor - Explore

Welcome Reception Meet & Greet

Relax and enjoy an evening on the terrace of the Renaissance Hotel's Raised: An Urban Rooftop Bar (3rd Floor) with your fellow community members!

This Session is For: Parents (Adults Only!)

Session Times: Friday & Saturday - 7:00-11:00 pm

Raised Urban Rooftop Bar (3rd Floor)

Parents Social

Hang out with your peers for a fun night to meet and interact at The Renaissance Hotel's Staytion Restaurant (1st Floor)!

This Session is For: Young Adults

Session Times: Friday & Saturday - 7:00-11:00 pm

Staytion Restaurant (1st Floor)

Teens & Young Adults Adults Social

Relax and enjoy an evening on the terrace of the Renaissance Hotel's Raised: An Urban Rooftop Bar (3rd Floor) with your fellow community members!

This Session is For: Affected Individuals & Their Guests (Adults Only!)

Session Times: Friday & Saturday - 7:00-11:00 pm

Raised Urban Rooftop Bar (3rd Floor)

Affected Adults Social

 

Saturday, July 27

Join us for a night out at Dick's Last Resort for a SciFam dinner buffet! ($45 adult/teen, $15 child). The restaurant is a 5 minute walk from the conference venue. Price includes buffet dinner, a variety soft drinks, dessert & gratuity. Kids Buffet also available - Dietary needs accommodated. Alcoholic beverages will be available at your additional expense.

A LIMITED number of walk-ins may be allowed, space permitting, so make sure you added this event to your registration! Forgot to sign up for this event? Email us at scifam@curecmd.org

This Session is For: Everyone (YOU MUST REGISTER AHEAD OF TIME)

Session Times: Saturday - 5:00-7:00 pm

Dick's Last Resort, Chicago

SciFam Group Dinner at Dick's Last Resort

A men's gathering for dads/adult caregivers. Together and in small groups we will discuss life, grief, and the impact of CMD on fatherhood, marriage and career. Hosted and facilitated by Levi Gershkowitz, founder of Living in the Light.

This Session is For: Dads and Male Caregivers (adults only)

Session Facilitator: Levi Gershkowitz

Session Time: Saturday - 8:30-11:00 pm

Raised Urban Rooftop Bar (3rd Floor/drinking optional)

SALT: A Men's Gathering

Relax and enjoy an evening on the terrace of the Renaissance Hotel's Raised: An Urban Rooftop Bar (3rd Floor) with your fellow community members!

This Session is For: Parents (Adults Only!)

Session Times: Friday & Saturday - 8:00-11:00 pm

Raised Urban Rooftop Bar (3rd Floor)

Parents Social

Hang out with your peers for a fun night to meet and interact at The Renaissance Hotel's Staytion Restaurant (1st Floor)!

This Session is For: Teens & Young Adults

Session Times: Friday & Saturday - 8:00-11:00 pm

Staytion Restaurant (1st Floor)

Teens & Young Adults Social

Relax and enjoy an evening on the terrace of the Renaissance Hotel's Raised: An Urban Rooftop Bar (3rd Floor) with your fellow community members!

This Session is For: Affected Individuals & Their Guests (Adults Only!)

Session Times: Friday & Saturday - 8:00-11:00 pm

Raised Urban Rooftop Bar (3rd Floor)

Affected Adults Social

 

Sunday, July 28

Attention brothers and sisters! We welcome you to our Sibshop where you will meet other unaffected siblings and find peer support in a fun and informal setting! This session will be led by 2 trained Sibshop Facilitators, who are both adult siblings of people with disabilities. We will laugh, talk, and explore what it means to be a sibling. Two sessions will be offered for the following age groups: Unaffected sibs ages 5-12 and ages 12-17. We look forward to meeting you! Part of our Kids Camp Agenda.

This Session is For: Unaffected Siblings (only!) ages 5-12

Session Facilitators: Katie Arnold and Amy Halm

Session Time: Sunday - 9:00-10:30 (additional session for ages 12-17 at 10:45 am)

Sibshops: A Fun, Interactive Session for Unaffected Siblings Ages 5-12

Learn about how you can get involved with Adaptive Sports from a member of the disabled community.

This Session is For: Kids and Pre-Teens interested in Adaptive Sports

Session Facilitator: Dan Ferreira

Session Time: Sunday - 9:00-10:30 am (additional young adult/adult session at  1:15pm)

Adaptive Sports: An Interactive Session for Kids

Watch a 10 minute documentary about a day in the life at Temple University for Liam Miller, then ask your questions, and talk to college students who have made going to college (even living in the dorms!) not just possible but a great experience in the transition from kid to adult.

This Session is For: Anyone interested in attending college. Target Audience: Ages 12-24 (parents may attend, but this is really for your kiddos!)

Session Facilitator: Miller, Hoban, Conway, Gross, Knutson, Royster

Session Time: Sunday - 10:45-11:45 am

The College Experience

Learn about some of the options the Social Security Administration offers in the way of disability benefits, the disability claim process and other programs related to the U.S. Social Security Administration. Bring your questions!

This Session is For: Anyone interested in learning more about disability benefits within the U.S. Social Security Administration

Session Facilitator: Brian Kalita

Session Time: Sunday - 10:45-11:45 am

Social Security Benefits Explained

Community member and international sex educator, Anna Hallgren will share guidance on how to communicate and promote healthy body awareness and sexuality for your disabled child or patient. 

This Session is For: Parents and Professionals (no kids, please!)

Session Facilitator: Anna Hallgren

Session Time: Sunday - 10:45-11:45 am

Body Awareness: A Seminar for Parents & Professionals

Learn more about the financial planning tools and opportunities available to the Special Needs Community.

This Session is For: Anyone interested in learning more about financial planning

Session Facilitator: Michael Walther

Session Times: Sunday - 10:45-11:45 am (session repeated at 1:15 pm)

Special Needs Financial Planning

Have you been so busy taking care of others that you’ve not had time to care for yourself? Balancing responsibilities is challenging when caring for a loved one with a disability. Learn how to regroup, replenish, and stay vibrant and productive. Explore your interests and passions in life, learn how to be kind to yourself and set realistic goals for long-term health and wellness, create a plan to stay focused and motivated, Identify resources and strategies for success. 
 

This Session is For: Parents, Spouses and other Caregivers (no kids, please!)

Session Facilitators: Kristine Cichowski

Session Times: Sunday - 10:45-11:45 am  (session repeated at 1:15 pm)

Power to Explore: (re)Discovering You - Self Care & Advocacy for the CMD Caregiver

Learn about how you can make the most of travel with our own community's disability travel expert.

This Session is For: Anyone interested in Disabled Travel

Session Facilitator: Jake Hytken

Session Time: Sunday - 10:45-11:45 am

Where There's a Wheel, There's a Way: Disability Travel

Attention brothers and sisters! We welcome you to our Sibshop where you will meet other unaffected siblings and find peer support in a fun and informal setting! This session will be led by 2 trained Sibshop Facilitators, who are both adult siblings of people with disabilities. We will laugh, talk, and explore what it means to be a sibling. Two sessions will be offered for the following age groups: Unaffected sibs ages 5-12 and ages 12-17. We look forward to meeting you!

This Session is For: Unaffected Siblings (only!) ages 12-17

Session Facilitators: Katie Arnold and Amy Halm

Session Time: Sunday - 10:45-11:45 am (additional session for ages 5-12 at 9:00 am)

Sibshops: A Fun, Interactive Session for Unaffected Siblings, Ages 12-17

Learn about the latest equipment and vehicles available to the CMD community from community member Simon Cantos and Mobility Works representative Steve Sturt. We will have equipment and a van onsite to allow you to explore your options.

This Session is For: Anyone interested in learning more about adaptive vehicles and equipment designed to make driving accessible

Session Facilitators: Simon Cantos and Steve Sturt

Session Times: Sunday - 10:45-11:45 am (session repeated at 1:15 pm)

Adaptive Vehicles & Driving (with Live Demo)

Learn more about the financial planning tools and opportunities available to the Special Needs Community.

This Session is For: Anyone interested in learning more about financial planning

Session Facilitator: Michael Walther

Session Times: Sunday - 1:15-2:15 pm (repeated session)

Special Needs Financial Planning

Community member and Rehabilitation physician Patrick Foye leads a discussion on how to navigate the barriers to living a full disabled life. Come share your live hacks and home improvement solutions and learn from others in the community.

This Session is For: Anyone interested in improving personal accessibility

Session Facilitators: Dr. Patrick Foye and Adam Foye

Session Time: Sunday - 1:15-2:15 pm

Life Hacks & Navigating the Healthcare System

Have you been so busy taking care of others that you’ve not had time to care for yourself? Balancing responsibilities is challenging when caring for a loved one with a disability. Learn how to regroup, replenish, and stay vibrant and productive. Explore your interests and passions in life, learn how to be kind to yourself and set realistic goals for long-term health and wellness, create a plan to stay focused and motivated, Identify resources and strategies for success. 
 

This Session is For: Parents, Spouses and other Caregivers (no kids, please!)

Session Facilitators: Kristine Cichowski

Session Time: Sunday - 1:15-2:15 pm (repeated session)

Power to Explore: (re)Discovering You - Self Care & Advocacy for the CMD Caregiver

Part 1 of our Transitioning Series. This session for parents and professionals will do a deep dive into the challenges and issues around raising a teenager with CMD.

This Session is For: Parents and Professionals (no kids, please!)

Session Facilitators: Jake Hytken and Jodi Wolff

Session Time: Sunday - 1:15-2:15 pm

Transitioning Through the Teen Years: A Discussion for Parents

Learn about the latest equipment and vehicles available to the CMD community from community member Simon Cantos and Mobility Works representative Steve Sturt. We will have equipment and a van onsite to allow you to explore your options.

This Session is For: Anyone interested in learning more about adaptive vehicles and equipment designed to make driving possible

Session Facilitators: Simon Cantos and Steve Sturt

Session Times: Sunday - 1:15-2:15 pm (repeated session)

Adaptive Vehicles & Driving (with Live Demo)

Learn about how you can get involved with Adaptive Sports from a member of the disabled community.

This Session is For: Adults and Young Adults interested in Adaptive Sports

Session Facilitator: Dan Ferreira

Session Time: Sunday - 1:15-2:15 pm (kids' session at 9:00 am)

Adaptive Sports: An Interactive Session for Young Adults and Adults

Have you wanted to get involved in advocacy but don't know where to start? Join community members Lani Knutson and Rob Sunris as they introduce you to the world of Rare Disease Advocacy. Whether you have 5 minutes a month or 10 hours a week to devote to advocacy, you can be involved in many different ways that help our voices be heard. Also learn what the CMD Advocacy Team has been up to the past few months including our attendance at Rare Disease Week on Capitol Hill this past February.

This Session is For: Anyone interested in rare disease legislative advocacy

Session Facilitators: Lani Knutson and Robert Sunris

Session Time: Sunday - 1:15-2:15 pm

Rare Disease Legislative Advocacy: A Beginner's Guide

Community member and international sex educator, Anna Hallgren will share guidance on how to explore sexuality with a disability, including body awareness, sexual orientation, sexual intimacy and aids, how to ask your PCA for help, and more. This session will be a safe and open discussion for exploring an often neglected topic in the disability world.

This Session is For: Affected Individuals & Partners (no parents, please!)

Session Facilitator: Anna Hallgren

Session Time: Sunday - 2:30-3:30 pm

Let's Talk About Sex: A Seminar for Affected Individuals and their Partners

Part 2 of our Transitioning Series. This session for parents and professionals will do a deep dive into the challenges and issues around the transition to adulthood for a young adult with CMD.

This Session is For: Parents and Professionals (no kids, please!)

Session Facilitators: Jake Hytken and Jodi Wolff, PhD

Session Time: Sunday - 2:30-3:30 pm

Transitioning Into Adulthood: A Discussion for Parents

It is sometimes difficult to balance care and support for unaffected siblings while also managing care for a child or adult with CMD. This session will explore the unaffected sibling experience and perspective. Resources and information will be shared for parents, adult siblings, and professionals to support unaffected siblings at various life stages from younger kids to older adults.

This Session is For: Parents, Unaffected Adult Siblings and Professionals Only (no kids)

Session Facilitators: Katie Arnold and Amy Halm

Session Time: Sunday - 2:30-3:30 pm (repeated session)

The Sibling Experience: An Interactive Session for Parents, Adult Siblings and Professionals

It is sometimes difficult to balance care and support for unaffected siblings while also managing care for a child or adult with CMD. This session will explore the unaffected sibling experience and perspective. Resources and information will be shared for parents, adult siblings, and professionals to support unaffected siblings at various life stages from younger kids to older adults.

This Session is For: Parents, Unaffected Adult Siblings, Professionals (no kids, please!)

Session Facilitators: Katie Arnold and Amy Halm

Session Time: Sunday - 1:15-2:15 pm (session repeated at 2:30 pm)

The Sibling Experience: An Interactive Session for Parents, Adult Siblings and Professionals

Community member, Occupational Therapist and IEP School Counselor Stephanie Olson shares resources and strategies for obtaining accessible accommodations, modifications and services to make the most of your child's school experience. Learn the law, your rights, and how to advocate for your child's needs.

This Session is For: Anyone with school aged children looking to learn more about services

Session Facilitator: Stephanie Olson, OTR/L

Session Time: Sunday - 2:30-3:30 pm

504/IEP: Getting the Most from Public School Support

Learn about developments in potential methods of the measurement and care of contractures using robotics and virtual reality. Come brainstorm with us about how these new technologies could be useful for you!

This Session is For: Anyone interested in improving contractures & new technologies

Session Facilitators: Tracy Ogata, Gabe Klecker, Reghan Foley, MD

Session Time: Sunday - 2:30-3:30 pm

Developing Technologies for Measurement & Care of Contractures

Community member Mindy Scheier shows us that adaptive clothing can be fashionable.

This Session is For: Anyone interested in learning more about adaptive clothing

Session Facilitator: Mindy Scheier

Session Time: Sunday - 2:30-3:30 pm

Adaptive Clothing: The Future of Fashion is Inclusion