October 11, 2019
8:15 AM - 4:30 PM
8:15 AM -
Robert Wood Johnson Conference Center
3100 Quakerbridge Road, Hamilton, NJ, 08619
ABOUT THE EVENT
ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig's disease, is considered a rare neuromuscular disease that affects approximately 30,000 Americans between the ages of 40-70 each year. However, people of all genders, races, ages, and cultures from various demographics are affected by ALS. Every 90 minutes, someone is diagnosed with ALS and someone passes away from ALS. Currently, there is no known cause or cure for the disease and the average person lives 2-5 years after diagnosis.
As someone is battling ALS, they eventually lose the ability to talk, walk, eat, and breathe, and rely on the help of others, including spouses, parents, neighbors, and children, to complete daily tasks.
There are many ALS conferences regarding patient care and caregiver support. That's great news! However, not many address the specific needs of young carers of ALS.
Hope Loves Company is the only nonprofit dedicated to providing emotional and educational support to children and young adults who have had or have a loved one battling ALS or Lou Gehrig's disease. Due to our very specific mission and with 10 years of experience and revered work, we are hosting the first ever HLC Kids Count conference at the Robert Wood Johnson Conference Center in Hamilton, NJ on October 11, 2019 from 8:15 AM - 4:30 PM.
Many people who are living with ALS have children or grandchildren in their lives. The changes that take place with a diagnosis of ALS impact the entire family. Our goal is to help share information and resources to those who want to provide support to a child affected by ALS.
We receive calls from well-meaning adults, frequently asking very important questions, such as:
"How can I best support my child who seems to be struggling with everything that is happening?"
"What are the signs to recognize that my child is struggling?"
"I have three children of different ages, how can I effectively support them all?"
The HLC Kids Count ALS Conference will feature speakers with a variety of knowledge and experiences, including neurologists, educators, child caregivers, art therapists, psychologists, and more.
Please join us to learn about resources and information that can help answer these very important questions and help you feel more confident in your role as a parent, teacher, instructor, counselor, or child advocate.
REGISTRATION AND CONTINENTAL BREAKFAST
WELCOMING REMARKS AND INTRODUCTION
KIDS COUNT (Jodi O'Donnell-Ames, Dr. Terry Heiman-Patterson, and Mackenzie Anderson)
SUPPORTING CHILD CAREGIVERS
SESSION A: How Communities Can Support Children (Ryan Matthews and Dr. Michael Palmer)
SESSION B: Facing ALS as a Family (Shannon Sullivan and Sara Feldman)
SESSION C: Children and Bullying (Kidsbridge)
BREAKOUT SESSION PANEL DISCUSSION
LUNCH AND UNDERSTANDING CHILDREN'S GRIEF (Jesse Bassett)
CHILD CAREGIVERS (Connie Siskowski)
Parents share the challenges their children face having a loved one with ALS
HELPING CHILDREN COPE
SESSION A: Music as Emotional Language (Jesse Neuman)
SESSION B: The Healing Power of Art (Jane Zamost)
SESSION C: The Many Benefits of Yoga and Meditation (Tina LeMar)
Children caregivers share their experiences and challenges
MUSIC AND CLOSING REMARKS