A Cure For Caelan Fundraiser
Schedule
Sat Mar 22 2025 at 05:00 pm to 09:00 pm
UTC-04:00Location
Amvets post 147 | Haverhill, MA
Advertisement
Please join us at our fundraiser on March 22, 2025, to raise awareness and funds for research, treatment, and most importantly, support our amazing son Caelan. Caelan was diagnosed with Atypical Pantothenate Kinase-Associated Neurodegeneration (PKAN) in 2023. At the time of his diagnosis, Caelan had dystonia in his hands. As the disorder progresses, it is negatively impacting his balance, mobility, and speech. Completing everyday tasks can be challenging for Caelan but he is incredibly strong and resilient. PKAN is a neurological disorder that belongs to a group of conditions called neurodegeneration with brain iron accumulation (NBIA). PKAN causes progressive neurodegeneration, characterized by iron accumulation in the brain, leading to symptoms like uncontrollable muscle contractions (dystonia), irregular involuntary movements (chorea), rigidity, stiffness, difficulty walking and loss of mobility, speech and swallowing problems, vision problems, and cognitive decline. Although there is no cure for PKAN, there are treatment options that can help reduce the severity of the symptoms.
Research is ongoing to better understand PKAN and develop targeted therapies. Approaches being explored include:
• Gene therapy.
• Iron chelation therapies to reduce brain iron levels.
• Enzyme replacement therapies.
Caring for someone with PKAN can be challenging due to the progressive nature of the disease, which often requires a multidisciplinary approach, specialized treatments, and assistive devices.
PKAN significantly impacts the quality of life for individuals and families. We are incredibly grateful to have such amazing and supportive family and friends. Please join us for food, raffles, music, kid events, 50/50 raffle.
Cash Bar
$10 for adults and $5 for kids
To learn more about PKAN visit LovingLoic.org
Advertisement
Where is it happening?
Amvets post 147, 576 Primrose St, Haverhill, MA 01830-2659, United States,Haverhill, MassachusettsEvent Location & Nearby Stays:
