When you start a non-profit to save your family from a devastating neurodegenerative disease, it is really difficult to “take the emotion out of your job.”
Today I feel intense emotion; sad for the five family members I have lost to ALSP and all of the ALSP warriors we have lost, overwhelming joy for those clinging to hope for themselves and future generations who live with the worry of also carrying this deadly mutation and gratitude to those healthy volunteers who assisted in moving this study to the next phase, without you we would not have this valuable data and hope for a future without #ALSP.
And of course, so many emotions for the hard work and dedication of all employees at Vigil Neuroscience. I know many of you have cried with me as I have shared my story and the story of others living and caring for those with ALSP. Your hard work and dedication to the ALSP community is noticed and appreciated.
Much love, Heidi Edwards
Please read the full press release: Ongoing Phase 1 Clinical Trial Evaluating VGL101 in Healthy Volunteers Supporting Phase 2 Initiation in ALSP