Coping with a loved one's diagnosis of ALS is never easy, but it is especially hard for children and young adults. When a parent or grandparent has any disease, one of the hardest things to do is discuss the illness, progression, and emotions with young ones. Many people may feel a sense of fear that they will harm or scare them by disclosing such personal information. Avoiding the discussion may only serve to create more confusion, blame, or fear in the child and create communication barriers in the family. The Golden West Chapter of The ALS Association offers many tools and resources for families facing ALS on our website as well as this special guide for talking with and supporting young adults.
Care for Kids Grant
Most people with ALS remain at home throughout their course with the disease and the many challenges of ALS can be emotionally, physically and financially draining on everyone. Trying to manage a loved one's care, along with their family's basic needs, while there are young children at home can be overwhelming, and there is little room for any expenses outside of necessities. These children and grandchildren who are living with a loved one who has ALS face many extraordinary challenges that set them apart from their peers.
To support these families, the Golden West Chapter created a special program in 2007 called "Care for Kids" to offer small grants to provide these children with access to the same childhood opportunities that many of their friends are experiencing. This includes school tutoring, soccer camp, swimming lessons, horseback riding, music classes, school supplies, and other enrichment activities of their choice. The Golden West Chapter is grateful to the L.L. Foundation for Youth for a two-year grant to establish the L.L. Foundation for Youth Fund. This Fund will benefit young people in California, between the ages of 13 to 26, who have been affected by ALS. The Foundation made this generous gift in memory of Maureen Wheeler, and these dollars allow the Chapter to additionally support these families that have teens and young adults by providing respite care, and critically needed medical equipment that supports the person with ALS, which in turn provides help to the family members who are providing care in the home.
If you have a child, teen, or young adult in the household, please contact your care manager for more information on how to receive a special grant. People with ALS and their families come first in everything we do. Our goal is to encourage these children, renew their spirits, and in turn, support the entire family in their fight against ALS. If you would like to support programs for families facing ALS, please make a gift today!
Our community partner, Hope Loves Company, hosts camps and other resources for children, teens or young adults who have experienced coping with a loved one battling ALS. These activities give them a chance to connect with other youth their age who are dealing with the same issues. The camp program focuses on fun activities, while also incorporating opportunities to engage in group and peer-to-peer counseling, and teaches young people methods they can use to cope with a loved one’s disease. Camp HLC is held in multiple locations across the country, and it’s free to the families who attend—thanks, of course, to the generous support of donors, sponsors, and partners like the Golden West Chapter. For more information about enrolling your child in this meaningful and fun weekend program, please contact Hope Loves Company.
The Ventura County Community Foundation scholarship was established by Greg Merfeld on February 9, 2011 to benefit college students whose parents have been diagnosed with ALS. The Merfeld Family Foundation Scholarship Fund at VCCF is a national award with preference given to students in Southern California and Merfeld's native Iowa.
The Jane Calmes ALS Scholarship Fund is for students pursuing an accredited college degree or vocational certificate, and whose ability to cover the costs is severely compromised as a result of their family’s financial burden of ALS. The ALS Association and Mark Calmes, of the Association's National Board of Trustees, established the scholarship in honor of Mark's wife, Jane, who lost her battle with ALS in 2017.
The Iron Horse Scholarships support dependents of individuals with ALS with financial grants for their post-secondary educational goals, before or within five years of their loved-one’s death from ALS. In honor of Lou Gehrig's record for consecutive Major League Baseball games played, Iron Horse Scholarships provide up to $2,130/semester for up to eight semesters.
Ways to Get Involved
Our Chapter offers many Community Outreach events all throughout the year, like our family-friendly Walk to Defeat ALS and Ride to Defeat ALS. We welcome and encourage participation and opportunities for the younger members of our ALS community in a variety of ways. Children and young adults, along with their classmates, can develop their abilities in the areas of community organizing, leadership, written and verbal communication, and fundraising as volunteers. They can strengthen social bonds with other supporters in the fight against ALS, and foster creativity by providing outlets for self-expression. The spirit of teamwork, integral at the core of each of these events, ultimately inspires and motivates youth with the determination to defeat ALS.