The Live the Lake NJ Family of businesses are a group of unique experiences and locations around Lake Hopatcong.
Sep. 22, 2022
This October, Lake Hopatcong Golf Club and Windlass Restaurant will hosting a fundraiser to support Live Love Landon, a local non-profit organization. We will be donating portions of sales throughout the month by hosting our mini golf weekend, Dine to Donate at The Windlass and Pinky Party/Lucky Basket event. We ask that you join the effort with your financial sponsorship.
Live Love Landon, a non-profit organization, was established in 2022 by Danielle Martini and Shane Wierks, Mount Arlington parents of Landon Reed. Landon was diagnosed with neurological Gaucher disease earlier in 2022. The mission of Live Love Landon is to:
There are different ‘types’ of Gaucher disease. Each type presents with distinct symptoms, diagnosis, prognosis, and life expectancy. Only 1 in every 1,000,000 people are diagnosed with Neurological Gaucher disease. Both parents need to carry one copy of the damaged gene for the disease to present symptomatically in their children. Parents who carry the damaged gene show no signs of illness. Although genetic testing identifies this gene, most parents learn of their carrier status after their child is diagnosed.
Neurological Gaucher disease has the earliest onset often presenting in the first year of life. In addition to liver, spleen and bone problems associated with all Gaucher disease, neurological Gaucher disease effects the brain. Symptoms include irregular eye movement, hearing loss, language processing disorders, respiratory problems, seizures, loss of ability to swallow, cognitive delays and irreversible brain damage. There is no cure. There is no affective treatment of symptoms. Life expectancy is around two years of age.
Landon Reed was born February 14th, 2022. He is the only child of Danielle and Shane with captivating blue eyes and an eager sunny smile. Shortly after celebrating Landon’s first month birthday, he was diagnosed with neurological Gaucher disease (type 2/3).
However, a clinical trial to identify and apply treatments for Neurological Gaucher disease is underway at Prevail institution in Minnesota. Six month old Landon is one of 5 babies globally to receive cutting-edge gene replacement therapy as part of this study, including hearing aids, gene replacement therapy, special diet/formula, enzyme treatment and much more. Landon and his family must travel, spend hours at the hospital in Virginia every Monday and in Minnesota once a month. All of this means nothing if they know they can improve his quality of life by managing symptoms.
His family hopes that Landon will not be the only one to benefit by the clinical trial. Through his participation, scientists and doctors around the world are one step closer to identifying treatments, or perhaps a cure.
Until then, it is their hope that Live Love Landon will have a meaningful impact. Live Love Landon will serve the families and children affected by Neurological Gaucher disease through educational and awareness initiatives as well as supporting a community looking for hope, treatment and a cure.