Funding a Need (your donation will help to provide the following services, free of charge, to families in the U.S.)
About HLC: Hope Loves Company (HLC) is a 501c(3) nonprofit with the mission of providing both educational and emotional support to children and young adults who have had or have a loved one battling ALS.
Why was Hope Loves Company founded?
Hope Loves Company® was founded in 2012 by Jodi O’Donnell-Ames, who lost her husband, Kevin Gerard O’Donnell, to ALS in 2001 at the age of 35. Their daughter, Alina, was almost three years old when Kevin was diagnosed. In 2003, Jodi married Warren Benton Ames and became the step-mother to his children, Nora and Adam, who were then 11 and 8. Nora and Adam lost their biological mother, Tina, to ALS in 2000. Jodi created Hope Loves Company from her home to encapsulate a program that she wished had been available to her children.
The first HLC program was a family fun day which was held in both NJ and PA. This one day program brought families affected by ALS together and provided fun and an opportunity to connect.
That first program was so successful that a second program was created: Camp HLC.
Camp HLC® (A donation of $850 sponsors the entire Camp HLC weekend for one child. $250 covers the cost of lodging and meals for one child; $750 provides all participants with a Camp HLC t-shirt; $300 provides one hour of special programming such as music and art therapy, yoga or meditation, etc.; $450 covers the cost of a mental health professional or LSW for the entire weekend.)
A weekend overnight retreat for children and young adults, as well as their families, who currently have or have had a loved one living with ALS. This special weekend is an opportunity to have fun, to be challenged through team building exercises, and to meet other children with similar life experiences. We also provide art and music therapy, healing circles facilitated by grief counselors, and many opportunities for the children to speak about their ALS experience in a comfortable, informal environment. Campers have fun, meet peers who share in their experiences, and gain valuable coping techniques to face their continued challenges. HLC has provided 30 Camp HLCs, free of charge thanks to our supporters, in seven years in seven states, including: NJ, NY, MA, IN, FL, IL and CA. In 2020, we will bring Camp HLC to Georgia for the first time.
As the years have passed, we have evolved our programs to better meet the needs of our families. Hope Loves Company now provides additional programs as well and all at no cost to families living with ALS, including:
Hugs of Hope care packages: ($80 sends a Hug of Hope Care package)
Hugs are special packages sent to a child who has or had a loved one affected by ALS for FREE. These include: a children’s book explaining ALS or an ALS caregiver guide, a t-shirt, toy, stuffed animal, HLC band, snack, a card of encouragement, and an invitation to join us at Camp HLC.
Teen Retreat: ($150 sends a teen to a weekend retreat)
A weekend wellness retreat for campers ages 15-21. This special and free weekend encourages discussion and activity regarding food, exercise, medication, and healthy habits for coping with life’s challenges.
Ambassadors: A Young Ambassador is someone who has attended at least one Camp HLC and who would like to help introduce new campers to the Camp HLC experience as well as give back in other volunteer roles. For example, Young Ambassadors may speak publicly about their ALS journey, Hope Loves Company, or ALS advocacy; host a fundraiser; write for the HLC newsletter or website – there are many ways for YA’s to be involved.
Susan B. Anderson Scholarship: ($1,000 provides one scholarship)
Susan dedicated her life to helping others through teaching and she volunteered any time she could. In August 2014, at only 50 years old, Susan was diagnosed with ALS. She passed away just a year and a half later. The Susan B. Anderson scholarship is awarded in her memory to those who have led a selfless life by putting others before themselves and who have been affected by ALS.
Free books: ($30 send a free ALS children’s book to a family)
Any parent or organization can call and request one of our free books (we have three, two of which have been authored by Jodi O’Donnell-Ames) for their resource library. These include, The Stars that Shine by Jodi O’Donnell-Ames, Someone I Love Has ALS by Jodi O’Donnell-Ames and What Did You Learn Today? by Tina Singer Ames.
School Seminars: ($500 pays for an educational seminar)
HLC provides educational and informative seminars to schools.
In addition, families and schools can contact us about the resources available to children affected by ALS. We keep an ongoing list to share.
Most importantly, we continue to investigate more ways to support our families. In the fall of 2019, we provided the first HLC Kids Count ALS Conference. We included two other non profits, Good Grief and Kidsbridge to join our efforts and to share their expertise. The full day conference gathered 55 people from five states to learn about ALS, the role of children caregivers, and how to best support them. Families, educators, counselors, other ALS organization representatives, and child advocates were in attendance and we will offer our second conference in the fall of 2021.
In addition, families and schools can contact us about the resources available to children affected by ALS. We keep an ongoing list to share.
Based on our current situation, we have now created virtual programs to continue our mission during these challenging times:
Virtual Group Shares: ($200 supports a group share session)
A virtual group share, also known as a healing circle, is a peer support group facilitated by grief counselors or mental health professionals. Group shares will be age-appropriate and will take place once a month for three age groups: Adventurers, children between 6-9 years old, Hikers, children between 10-12 years old, and Guides, teenagers and young adults 13-21 years old. Our goal is to provide a safe space for children, teens, and young
adults affected by ALS to express their feelings and experiences and to facilitate fun and meaningful conversation between peers.
HLC ePals: ($50 helps to set up an ePal buddy)
HLC ePals is a digital pen pal program which connects children, teens, and young adults who have or had a loved one with ALS, caregivers and loved ones of ALS, and people living with ALS. ePals will be connected with similarly-aged and like-minded participants and each week, they will receive fun and educational prompts to discuss with their new friend!
Virtual Programs: ($200 provides one hour of programming)
We understand that many children, teens, young adults and families are at home right now and we’d like to provide weekly activities focusing on health and wellness, art, music, and fun! Check our website and social media for videos, live streams, and virtual meetings. Some activities include scavenger hunts, sing-a-longs, yoga, story time, and more!
Virtual Camp HLC: ($250 sends one child a Camp HLC Kit)
The virtual camp was created in response to the COVID-19 pandemic and it allowed us to welcome new families from Arkansas, Nevada, Minnesota, Michigan, Texas, Wisconsin, Alabama and more, who otherwise would not have been able to attend an in person Camp HLC. We will continue to host at least one Virtual Camp HLC each year to ensure that every family affected by ALS across the United States has the opportunity to join us for a magical camp weekend to have fun, feel supported, and meet others who share in their experiences.
Like traditional Camp HLC, we will meet from Friday evening to Sunday afternoon and enjoy different games and activities, make new friends, and support one another on our ALS journeys. Each family will receive a Camp HLC Kit, which will include everything they need for a memorable and interactive Camp HLC weekend. These kits include a Camp HLC t-shirt, gift cards for Friday dinner and Sunday breakfast, tie-dye kit, s’mores kit, cooling towel, water bottle, art supplies, books, and so much more!
Virtual Meet & Greets: ($150 provides one hour of programming)
Twice monthly, the Hope Loves Company staff will facilitate meetings between people living with ALS, people caring for a loved one with ALS, and people who have lost a loved one to ALS. The purpose of these meetings is to connect, have fun, chat, laugh, and share resources that may be helpful to one another.
These virtual programs will reduce feelings of isolation in ALS families, provide an opportunity and safe space for children and families to share their feelings, provide fun and recreational activities to partake in from home, provide activities and resources that can be utilized as a positive, healthy coping skill, and connect children, teens, young adults, and families with others who share in their experiences.