CHF Newsletter - February 2024
“Rare diseases may be individually rare, but they are collectively common. There are millions of people living with rare diseases. Today and every day, doctors like me care for rare, and it’s our privilege.” - Dr. Wendy Chung
Rare Disease Day is today - February 29 - the rarest day of the year! Around the world, Rare Disease Day is a chance to celebrate differences, bring awareness, support each other, raise funds, and come together as a community.
The Channeling Hope community is celebrating Rare Disease Day in many ways and we are excited to share these special stories with you, which have been featured in the local news in New York and Kansas.
Suzanne & Lukas' Story
Raising Awareness
PARENTS OF CHILDREN WITH NALCN DISORDERS CHANNEL HOPE, RAISING AWARENESS OF RARE DISEASES ON FEBRUARY 29, GLOBAL RARE DISEASE DAY
Eight-year-old Lukas is joining families of Channeling Hope in a global effort to raise awareness about rare diseases, including his own, this Thursday, February 29, on Rare Disease Day. Rare Disease Day is a globally-coordinated movement raising awareness for rare diseases and working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Rare Disease Day is observed every year on February 28 (or 29 in leap years) – the rarest day of the year, in support of 300 million people across the world living with rare diseases.
Lukas joins with his family and the families of Channeling Hope Foundation (CHF) to shine a spotlight on rare diseases, an organization started in 2023 by parents of children with NALCN genetic mutations who connected over a shared hope for a world free of complications from NALCN channel diseases. These sodium leak channel diseases result from mutations in the NALCN gene and associated proteins that play a crucial role in regulating the healthy firing of neurons and other cells involved in the body’s rhythmic processes like breathing and sleep.
In a testament to the strength of parental love and the unbreakable bonds of community, five parents of children with NALCN disorders have united over a shared mission. These devoted parents, brought together by a common purpose, dedicate countless hours each week to propel forward the foundation they started in July 2023. Despite never having met in person, these parents have forged deep connections, finding solace and understanding in each other's shared experiences. As they continue to work towards their goal of building a nurturing community for those affected by NALCN disorders, they eagerly anticipate the day when they can finally come together, embrace, and celebrate their shared journey in person.
“Rare diseases may be individually rare, but they are collectively common. There are millions of people living with rare diseases. Today and every day, doctors like me care for rare, and it’s our privilege.” - Dr. Wendy Chung
In the short time since its inception, CHF has garnered many collective partnerships, including with Dr. Wendy Chung, chair of the Department of Boston Pediatrics and recipient of Rare Impact Award from the National Organization of Rare Disorders, and a champion for children and doctor for Lukas and other children living with rare diseases. She emphasized the significance of Rare Disease Day, “Rare diseases may be individually rare, but they are collectively common. There are millions of people living with rare diseases. Today and every day, doctors like me care for rare, and it’s our privilege.”
Lukas reached out to several local businesses in the Rochester area, asking for them to support his cause. Special thanks to Ridge Donuts, Schutt’s Apple Mill, and Secret Ingredient Cupcakery who will be selling baked goods on February 29 representing zebras, the symbol of rare diseases. Lukas will also be sharing his personal story with his third grade classmates, by reading a book he wrote about his journey with a rare disease.
Update: Watch Lukas share his story
CONTACT: Suzanne Engel, Psy.D., Co-founder, Channeling Hope Foundation, channelinghopefoundation.sengel@gmail.com
Jill & Rory's Story
Celebrating Inclusion
UNITING FOR RARE DISEASE DAY: A COMMUNITY'S CELELBRATION OF INCLUSION AND SUPPORT
Rare Disease Day unites patients across thousands of rare conditions, where each condition has a very small number of patients. John and Jill Wahl, the parents of Rory Wahl, invited their community to celebrate with them this year. The Sister's Boutique and Coffee Connection in their small town will be sharing information about Rare Disease Day and donating proceeds to Channeling Hope to advance research!
Rory and her first grade classmates will be hosting a party for her elementary school to thank the students and staff for their inclusion, extra support, patience, and love. Rory loves school and it is the wonderful people in her school that help her thrive.
Inclusion allows us to learn from each other!
Jill recently shared with another mother that Rory's classmates are tremendous examples of caring, supportive, and kind kids. Rory learns so much from watching and imitating her classmates. The mother responded that her child and family learn just as much from Rory. Inclusion allows us to learn from each other!
CONTACT: Jill Wahl, Director of Marketing & Communications, Channeling Hope Foundation, channelinghopefoundation.jwahl@gmail.com
Channeling Hope Merch
We added new designs for Rare Disease Day. The favorites are also available. You can order special Channeling Hope Merchandise Here: https://qrco.de/beqKiI Orders close March 4 and will be shipped to US locations in a couple weeks. If you are international, place your order for "PICKUP" and we will contact you to ship internationally.
Order Here