Search Results

Nonprofit that supports children and young adults affected by Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s disease returns with FREE WEEKEND CAMPS in SIX STATES Pennington, NJ – 29 March 2022 – Children and young adults who had or have a loved one battling ALS, as well as their families, are invited to attend Camp HLC this year in New Jersey (May 13-15), Indiana (June 19-24), Massachusetts (August 12-14), Illinois (September 16-18), Georgia (October 14-16) and California (November 18-20). A Virtual Camp will also take place via Zoom July 15-17. Hope Loves Company (HLC) is accepting registration for all six camps at www.hopelovescompany.org/camp-hlc. Camp HLC is a free weekend retreat for children and their families that have been affected by ALS. It offers many fun experiences - swimming, fishing, hiking, ropes courses, archery, boating, arts and crafts, music, and more! Counselors attend to facilitate Camp HLC “group shares,” or community groups, and are available for children who wish to seek additional support throughout the weekend. Campers will participate in activities that promote wellness and the development of healthy coping skills, such as yoga, art and music therapy. Even more important, children, teens, young adults, and family members attending will have the opportunity to form connections and build friendships with peers who share in their experiences and thus, feel less alone in their challenges. ALS, also known as Lou Gehrig’s disease, is a progressive neurodegenerative disease which affects approximately 30,000 Americans. Currently, there is no known cause or cure and the disease is fatal. It is estimated that 85% of ALS patients have a child or grandchild. These children are often the primary caregivers for their loved ones with ALS: bathing, dressing, feeding, and caring for them. As a result, these young caregivers face several challenges as they struggle to balance their various day-to-day responsibilities. A parent who attended Camp HLC in California said, “To realize that you are not alone in your journey with ALS is so helpful. It doesn’t matter what stage of the journey you are in, there is always someone who understands.” A 14-year-old Chicago camper said, “Camp HLC helped me because I was surrounded with people who knew what I was going through. It may help others because it shows they are not alone.” HOPE LOVES COMPANY, Inc. is the only non-profit and 501c (3) in the United States with the specific goal of providing both emotional and educational support to children and young adults who have or had a loved one battling ALS. Camp HLC is their premier program. Titusville, New Jersey resident and founder of HLC, Jodi O’Donnell-Ames, lost her husband to ALS in 2001, so she knows from personal experience how ALS affects a family, especially children. Since founding HLC in 2012, Jodi and her team have hosted 37 camps for families affected by ALS from across the country, all for no cost. To register for Camp HLC or to learn more about Hope Loves Company’s other free programs for families affected by ALS, visit www.hopelovescompany.org, call 609-730-1144, or find us on social media. Facebook and Instagram: @hopelovescompany, Twitter: @hopelovesco.

In 1995, Jodi O’Donnell-Ames’ husband Kevin O’Donnell, then 30, was diagnosed with Amyotrophic Lateral Sclerosis (ALS), a progressive neurodegenerative disease. Her first thought was how to share the news with their 2-year-old daughter Alina. Over the next five-and-a-half years, his diagnosis became more aggressive, and Alina started to notice her dad wasn’t like other kids’ dads. O’Donnell-Ames, a 49-year-old massage therapist from Titusville, New Jersey, searched for the right way to tell her daughter that her father’s sudden lack of coordination and inability to even open a sugar packet wasn’t just a temporary problem – it was terminal. Read the full Interview at People.com.

Jodi O'Donnell-Ames shares the impact of being a Russ Berrie Award honoree on her company, Hope Loves Company; Chip Paillex talks about the impact of COVID on non-profits and how the Russ Berrie Foundation helped him to continue to make a difference in the community; Saranne Rothberg discusses the impact of COVID-19 on The ComedyCures Foundation and the impact of being a Russ Berrie honoree. Watch the Interview on PBS.

Campers from last year’s 2014 Hope Loves Company Kids Camp for children and young adults with parents battling ALS. The 2015 Kids Camp is set to take place October 16 through 18. Children and young adults, who have parents battling ALS (Lou Gehrig’s Disease), are invited to attend the third Hope Loves Company Kids’ Camp in October. Hope Loves Company, in conjunction with another local ALS organization, HARK, provide the free camp for children in the tri- state area. Hope Loves Company Kids’ Camp is scheduled for October 16 through October 18, 2015, at Frost Valley YMCA located at 2000 Frost Valley Road in Claryville, New York. The camp program is free to 40 plus children and grandchildren of ALS patients in the tri-state area and beyond. It is a sleepover weekend retreat. Read the full article at Community News.

Steve Adubato sits down with Jodi O'Donnell-Ames, Founder of Hope Loves Company, to talk about how her organization provides educational and emotional support to children and teens who have a loved one battling ALS. Jodi also shares the impact of being a 2018 Russ Berrie Making a Difference Award honoree. Recorded 11/24/20 Watch Video Here

Nate shifts from one foot to the other as he stands in front of the camp clubhouse in Stillwater, N.J. At 15, his thoughts are still occupied by video games and goofy jokes, despite his own body and certain life events pushing him toward adulthood. He’s warm and approachable, with an easy smile and an earnest manner that can be disarming when you first meet him. Clad in summer-camp attire—dark sweat pants, dusty sneakers, and a blue “Swag Don’t Come Cheap” T-shirt—he takes in the last moments of a weekend that’s been loaded with climbing, storytelling, fishing, hiking, and plenty of laughter. In a short while, Nate (not his real name) will head home to bury his mother, who died last week from amyotrophic lateral sclerosis (ALS), and it will be then that memories of this weekend will be his salvation, something sweet to savor as the bitter pain of loss threatens to overwhelm him. In front of him stands a line of 30 or so fellow campers, counselors, and parents, who are all too familiar with what Nate is going through. They share the enormous grief that comes from having a family member with ALS (also known as Lou Gehrig’s disease). And as the line advances, each person wraps their arms around Nate to give him a deep, comforting hug. Some of them cry, others clasp his hand or give him a fist bump, and a few softly offer words of support that only he can hear. Let us hold you up just for a moment. Read the entire article at RealWoman.

As part of my series about “individuals and organizations making an important social impact”, I had the pleasure of interviewing Jodi O’Donnell-Ames a certified teacher, writer, massage therapist, member of Union Fire Co. and Rescue Squad and tireless advocate for Lou Gehrig’s disease, or ALS (Amyotrophic Lateral Sclerosis). She is also the founder of Hope Loves Company, a non-profit organization committed to providing educational and emotional support to children and young adults who had or have loved ones battling ALS. She lives with her husband Warren in Titusville, NJ. Their children, all young adults, have lost a parent to ALS before the age of 11. Jodi is the author of two books, The Stars that Shine and Someone I Love has ALS. She was chosen as People magazine’s, “Hero Among US” in 2015. She has appeared on the Today Show, Jersey Matters, Fox News and more. She has also given a Tedx about her life with purpose. Read the full Interview on Authority Magazine

The Hope Loves Company Documentary, directed by award-winning documentarian Steve Besserman, begins with the founding of Hope Loves Company and then follows several families affected by ALS. Worldwide, someone is diagnosed with ALS every 90 minutes. ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig's disease, is a neurodegenerative disease that affects 30,000 Americans annually. Currently, there is no known cause or cure for the disease. This July is the 80th anniversary of Lou Gehrig's famous "Luckiest Man on the Face of the Earth" speech. This heartwarming documentary is a story of triumph of the human spirit and the journey to shape grief into action. It's a story that celebrates a group of courageous caregiving teens and their families who deserve to be applauded. Please help bring recognition to this unique group of amazing caregivers by sharing this story of ALS, love, and hope with family and friends. Hopes Love Company (HLC) is the only non-profit in the U.S. dedicated to providing emotional and educational support to children and young adults who have had or have a loved one battling ALS. It's a resource that families can turn to for support. At their premier program, Camp HLC, children and young adults gather to share their experiences and to cry, laugh, and find friendship with others in similar situations. This documentary, as well as all of our programs, are made possible due to the generous donations of family, friends, corporations, and organizations. Thank you for watching and please consider making a donation to HOPE LOVES COMPANY to help support even more families affected by ALS. You can make a donation at https://www.classy.org/give/405462/#!/donation/checkout/. To learn more about Hope Loves Company and its free programs for children and young adults affected by ALS, visit http://www.hopelovescompany.org or call the HLC office at (609)-730-1144. Find us on social media - Facebook and Instagram: @hopelovescompany; Twitter: @hopelovesco. A special thank you to composer, Allen Krantz, for sharing his talent with Hope Loves Company. Watch documentary here.

Jodi O'Donnell Ames founded Hope Loves Company which hosts camps for children who have family members with ALS. Watch here.

A free weekend-long camp run by the nonprofit Hope Loves Company enables kids to be kids, even when their parents have ALS and need intense care around the clock. Willie Geist reports in the latest installment of TODAY’s inspiring Hope to It series. Watch the Today Show video!

On September 4, the Thunder honored the Hope Loves Company as a part of HOPE Week, a five day initiative that, each day recognizes remarkable people and organizations who are worthy of recognition for their inspiring actions and support of their communities. Watch here.

An ALS family is a unique family. Although roles may change, and challenges are many, love and support are the constant thread in holding an ALS family together. Never underestimate a child’s role in that unity. As a certified teacher, I have worked with children for most of my life. I have also raised three children who have lost a parent to ALS and understand how complicated life becomes for everyone in the family when a parent is ill. With that in mind, I have included a few suggestions below that were helpful to me as I learned to balance parenting with caregiving. Be patient with and aware of the organization and teamwork required for this juggling act. Read the full blog at simplesa.