The annual mito town meeting is our way of kicking off the new year by sharing all that we have in store for the next 12 months! We will hear from organizations and companies around the globe that have special opportunities, programs, and projects for patients and families affected by mitochondrial disease.
Timestamps with speaker and company names available in the video!
Resources Shared During Meeting
For your convenience, these are the resources and links that were shared in the chat during the meeting.
01:02:04 – Kira Mann, CEO: INFORM website: https://informnetwork.org
01:02:13 – Stephanie Harry, Patient Support Coordinator: https://informnetwork.org/
01:07:56 – Alex Fowler, Program Coordinator: Website: www.metabolicsupportuk.org
01:08:22 – Alex Fowler, Program Coordinator: Long-chain fatty acid oxidation disorders (LC-FAOD) questionnaire: https://forms.gle/gSmTRBrAWBBTcFwp8
01:10:54 – Alex Fowler, Program Coordinator: The Living Well Movement & Symposium: https://metabolicsupportuk.org/campaigns-and-insight-2/our-campaigns/living-well/
01:11:42 – Alex Fowler, Program Coordinator: Thoughts into Action Research Project: https://metabolicsupportuk.org/campaigns-and-insight-2/thoughts-into-action/
01:12:02 – Alex Fowler, Program Coordinator: Information about the assessment of triheptanoin for treating LC-FAODS https://metabolicsupportuk.org/campaigns-and-insight-2/medicines-consultations/
01:21:34 – Kira Mann, CEO: www.khondrion.com
01:26:43 – Kira Mann, CEO: https://www.umdf.org
For Support: https://www.umdf.org/get-support. UMDF Conference: https://www.umdfconference.org
UMDF Events: https://www.umdf.org/events
01:38:43 – Stephanie Harry, Patient Support Coordinator: SpectrumNeeds and QNeeds were in the study. www.Neuroneeds.com
01:39:15 – Cristy Balcells, UCB: cristy.balcells@ucb.com
01:42:58 – Alex Fowler, Program Coordinator: www.MitoWorld.org
01:45:20 – Stephanie Harry, Patient Support Coordinator: https://www.ucb.com/solutions/diseases/tk2d
01:48:09 – Toni Mees, Metabolic Support UK: toni@metabolicsupportuk.org
01:52:40 – Ashley Rowland, CureARS: https://www.curears.org/
01:58:20 – Kira Mann, CEO: www.mitopatients.org
01:59:27 – Alex Fowler, Program Coordinator: www.tisentotx.com
01:59:31 – Alex Fowler, Program Coordinator: https://clinicaltrials.gov/study/NCT06402123
02:04:58 – Alex Fowler, Program Coordinator: https://www.hopeforpdcd.org/
02:05:24 – Alex Fowler, Program Coordinator: https://healthpodcastnetwork.com/episodes/once-upon-a-gene/uniting-strengths-rare-disease-collaboration-on-a-shared-patient-registry-through-sanford-cords-with-cure-mito-and-hope-for-pdcd-leaders-frances-muenzer-pimentel-and-sophia-zilber/
02:16:26 – Dave Penake: www.saolrx.com
02:23:00 – Cure LBSL | Melody Kisor: www.curelbsl.org
02:23:05 – Cure LBSL | Melody Kisor: mkisor@curelbsl.org
02:33:02 – Alex Fowler, Program Coordinator: https://www.variantyx.com/patients/rare-genetic-disorders/mitochondrial-disorders-genetic-testing-with-genomic-unity/
02:49:55 – Shelley Bowen: Barth Syndrome Foundation Advocacy Timeline https://www.barthsyndrome.org/advocacy/elamipretide.html
02:54:47 – Emily Grandahl, Marketing Coordinator: Barth Syndrome Foundation FDA Meeting Video: https://vimeo.com/1044465582
02:55:59 – Katie Landes – Stealth BioTherapeutics: The full AdComm meeting can be found here: https://www.youtube.com/watch?v=guVE0UilHkY
03:06:17 – Alex Fowler, Program Coordinator: https://www.mitoaction.org/resources/siblingsupport/
03:06:32 – Alex Fowler, Program Coordinator: https://siblingsupport.org/sibshops/find-a-sibshop-near-you/
03:06:43 – Alex Fowler, Program Coordinator: https://siblingsupport.org/sibshops/want-to-start-a-sibshop/
03:06:51 – Alex Fowler, Program Coordinator: https://siblingsupport.org/publications/
03:06:59 – Alex Fowler, Program Coordinator: https://siblingsupport.org/resources/
03:07:49 – Alex Fowler, Program Coordinator: If you need support or have questions don’t hesitate to reach out to Stephanie Harry, Patient Support Coordinator via our Mito411 support line at (888)- 648-6411 or via email at sharry@mitoaction.org
03:07:51 – Emily Holl (she/her), Sibling Support Project: SibNet on Facebook for adult sibs: https://www.facebook.com/groups/SibNet
03:08:05 – Alex Fowler, Program Coordinator: Check out our weekly support calls by going here: https://www.mitoaction.org/programs-support/patient-and-family-support/support-calls/
03:08:24 – Emily Holl (she/her), Sibling Support Project: The Sibling Leadership Network for adult siblings: https://siblingleadership.org/
03:08:48 – Emily Holl (she/her), Sibling Support Project: emilyholl@siblingsupport.org
03:09:10 – Emily Holl (she/her), Sibling Support Project: And our website www.siblingsupport.org
03:09:59 – Alex Fowler, Program Coordinator: To sign up to become a “MitoChampion” reach out to Stephanie Harry at sharry@mitoaction.org
03:11:13 – Alex Fowler, Program Coordinator: To check out our Annual Art Show click here: https://www.mitoaction.org/join-the-cause/raise-your-voice/open-mito-mic-art-show/
03:12:10 – Alex Fowler, Program Coordinator: To see past MitoArtisan Playtime Events: https://www.mitoaction.org/programs-support/mitoaction-programs/mitoartisans-playtime/
03:12:57 – Alex Fowler, Program Coordinator: To check out our Podcast Series with Marcy Young: https://www.mitoaction.org/education/energy-in-action/
03:14:10 – Alex Fowler, Program Coordinator: Sign up for Wondering Wednesdays with Devin Shuman by going here: https://www.mitoaction.org/education/monthly-expert-series/wondering-wednesdays/
03:15:03 – Alex Fowler, Program Coordinator: Learn more about Marcel’s Way: https://www.mitoaction.org/programs-support/mitoaction-programs/marcelsway/
03:15:15 – Alex Fowler, Program Coordinator: FAOD Conference is July 25-27: https://www.mitoaction.org/events/internationalmetabolicconference/
03:24:12 – Emily Grandahl, Marketing Coordinator: MyMito App: https://www.mitoaction.org/mymito/
03:25:12 – Emily Grandahl, Marketing Coordinator: Matthew Harty Camper Find & Scholarship: https://www.mitoaction.org/programs-support/mitoaction-programs/mhcf/
03:25:28 – Emily Grandahl, Marketing Coordinator: Dalia’s Wish: https://www.mitoaction.org/programs-support/mitoaction-programs/dalias-wish/
03:26:26 – Emily Grandahl, Marketing Coordinator: Energy Walks: https://www.mitoaction.org/events/energywalk/
03:31:07 – Alex Fowler, Program Coordinator: More information on KL1333 FALCON study: https://abliva.com/research-and-development/clinicaltrials-falcon/
03:31:20 – Alex Fowler, Program Coordinator: Open access publication of KL1333 phase 1 study in Mito patients: https://academic.oup.com/brain/article/148/1/39/7911991
