Looking for a support group for Pure Autonomic Failure

@jaylee, There are several discussions that your son might find helpful here on Connect.

-- Anyone have pure autonomic failure? I was just diagnosed at Rochester:
https://connect.mayoclinic.org/discussion/pure-autonomic-failure-just-diagnosed-at-rochester/
-- Are there suggestions for living with pure autonomic failure (PAF)?
https://connect.mayoclinic.org/discussion/are-there-suggestions-for-living-with-pure-autonmic-failure-paf/
-- Is there anyone else out there with pure autonomic system failure?
https://connect.mayoclinic.org/discussion/is-there-anyone-else-out-there-with-pure-autonomic-system-failure/s
The Dysautonomia Support Network also has a Find Support page that might be helpful for finding local support group - https://www.dysautonomiasupport.org/find-support/.

Is your son looking for support to help manage his symptoms?

Hope this helps anyone dealing with central and/or peripheral nervous system issues. Believe me, I have no interest in CFNC other than to help those with these miserable disorders.

A respected Doctor here in North Carolina recommends reaching out to Dr. Laurie Mischley at Seattle Integrative Medicine, as she specializes in this field. She also wrote a book called Natural Therapies for Parkinson's Disease, which may be worth checking out. I believe her work goes beyond PD. Apparently, CFNC patients come from all over the US. I also understand that CFNC offers a free 15-minute consultation to be sure they are a good fit. Their website is: https://www.carolinafnc.com
Dr. Mischley works via telehealth.
Seattle Integrative Medicine: (206) 525-8012
https://seattleintegrativemedicine.com/
Believe me, I have no interest in SIM other than to help those with these miserable disorders.
Regards,
Sagan

Also, possibly related, MSA Trials:
Here are the key ongoing and recent clinical trials and therapeutic candidates:
Top Clinical Trial Candidates (2025–2026)
• Amlenetug (Lu AF82422 / Lundbeck): This is a human monoclonal antibody designed to bind to -synuclein and inhibit its aggregation.
o Status: A Phase 3 trial, MASCOT (NCT06706622), was initiated in late 2024/early 2025 following positive results from the Phase 2 AMULET trial. It was granted FDA Fast Track designation in February 2025.
• Emrusolmin (TEV-56286 / MODAG / Teva): A small molecule designed to target -synuclein oligomers.
o Status: In Phase 2 development (TOPAS-MSA study). It was granted FDA Fast Track and Orphan Drug designation in September 2025.
• ATH434 (Alterity Therapeutics): An oral iron-targeting agent designed to reduce iron-induced -synuclein aggregation in the brain.
o Status: Reported positive Phase 2 results in early 2025, demonstrating reduced brain atrophy.
• AB-1005 (AskBio / Bayer): An investigational gene therapy (AAV2-GDNF) delivered to the brain to promote the survival of dopaminergic neurons.
o Status: Completed enrollment for the Phase 1 REGENERATE MSA-101 trial in September 2025.
• Ampreloxetine (Theravance Biopharma): A norepinephrine reuptake inhibitor focusing on symptomatic treatment of neurogenic orthostatic hypotension (nOH) in MSA.
o Status: Active, but reported in March 2026 that the Phase 3 CYPRESS study did not meet its primary endpoint.
• ION464 (Ionis Pharmaceuticals): An antisense oligonucleotide (ASO) designed to prevent the production of -synuclein protein. AskBio +10
Key Areas of Investigation
-Synuclein Reduction: Antibodies (amlenetug) or small molecules (emrusolmin) to clear toxic protein buildup.
• Neuroprotection/Iron Regulation: Agents like ATH434 to prevent brain atrophy.
• Gene Therapy: Using GDNF to protect cells.
• Symptomatic Management: Treating debilitating orthostatic hypotension (e.g., ampreloxetine).
• Natural History Studies: Studies such as TRACK-MSA (NCT04450992) are ongoing to identify better outcome measures for future trials.
NYU Grossman School of Medicine +3
Recent Trial Outcomes
• Sirolimus: A study supported by the NIH was ended early after interim analysis indicated it was not effective in slowing MSA progression.
• Trial Challenges: The rapid progression of MSA makes trial recruitment and retention challenging, with a high failure rate for neuroprotective compounds.
Regards,
Sagan

I do not know of a support group. I am sorry that he was diagnosed. Did it take a long time for his diagnosis? It took a long time for my diagnosis. Please let me know if you have any questions, perhaps my experience can help you navigate some of this stuff.

Marc

Near Grand Rapids MI. Local Metro/UM hospital facility conducted tests for 7 years to find out cause of low blood platelets, fatigue, poor heat tolerance, lightheadedness. B12 deficiency, chronic thrombocytopenia, orthostatic hypotension. Then last October he had an embolic stroke-cause not identified. Decided to go to Mayo Rochester. Made three trips- they diagnosed PAF. He had the Sweat test (excruciating for him he said), Fat Aspirate, Tilt test, Autoimmune/Paraneoplastic Evaluation; along with Cardiology, Hematology, lots of blood work ups.
While at Mayo last trip at meet with Hematologist, his BP dropped to 64/43, 59/43, 68/44. Prescribed IV fluids. Same thing happened here in hospital last week.
Investigating Transcranial Doppler Test conducted at Keiser Clinic in Michigan.
Hoping for a support group where successful management of this disease has been seen. With 200,000 people having it I would hope one had been formed.
Thank you for your response. What is your diagnosis?