CHF Newsletter - January 2024

CHF Newsletter - January 2024

Our community is growing! We have nearly 900 followers across our platforms from at least 27 countries. Our social media posts reach over 5,600 individuals throughout the world. Below is a map showing where our followers are located.

One of the foundation's pillars is INCLUSION. We welcome the involvement and input of any and all patients, families, friends, health providers, and scientists who are interested in joining our efforts towards a world free from the complications of NALCN-related diseases. We are now on a mission to map out the location of all patients with NALCN, UNC80 or UNC79 mutations. Caregivers, help us map our patient community by telling us where you live.

This map shows where our followers are located (in green).


Join us for a special Family & Friends Webinar in honor of Rare Disease Day!

  • Date: Saturday, February 24, 2024
  • Time: 10:00am Central Standard Time (USA). Recording will be available for those who are unable to make this time.
  • Topics: Research updates, how to get involved this Rare Disease Day, and new opportunities to get involved in Channeling Hope

Please register here to attend. The recording will be made available to everyone who registers.

This is our biggest time of the year to raise awareness for our rare diseases - CLIFAHDD Syndrome and IHPRF 1 & 2. During the month of February, here are some ways you can bring more attention to these NALCN-related diseases:

  • Share your story with your local news, school or hospital.
  • Ask a local business to give a portion of their proceeds on Feb 29, 2024 (or another day in February) to Channeling Hope Foundation.
  • Start a Facebook or Instagram fundraiser.
  • Grow our following by sharing the Channeling Hope Foundation:
Share this newsletter by forwarding on to colleagues, friends, and family with a message from you explaining your connection to our mission.
Join our social media following and share our posts. Click the icons below to be taken directly to our social profiles.
Thanks for reading!

Sign Up for updates on CHF