FahrBeyond

All set up and poster tour showcasing @worldpdcongress and even wearing my @fahrbeyond tshirt :) Fahr's Disease: where are we at with this parkinsonism? @uclqsion @FraMagrinelli @kailashbhatia @amitbatla #Fahrs #WPC2026

This will have a significant positive impact for our community. Thank you to #NationalLottery players. @JOCampbellMP @aliciakearns @IonSynapse @QS_RareMD @amitbatla @FraMagrinelli @UCLIoN

We got the funding for "Me & My Fahr's" supporting us to bring together the people living with #Fahrs #PFBC The funds from @TNLComFund will be used for a pt fixed post to help mobilise the community, building an active volunteering network, connecting people& tackling loneliness

A big thank you to @kailashbhatia for chairing the panel, and panel members @FraMagrinelli @GJRNicolas Alexander Balck @amitbatla Miryam Carecchio & Henry Holden. A big thank you to Ana Rodrigues for all your hard work analysing the survey data

The panel discussed the findings and emerging trends in the data, how the insights are of use in thinking about patient care, the observations on the differences in phenotype-genotype of the condition, and the next steps for the findings.

Earlier this week, we held our first Expert Panel. The panel came together to look at the initial findings from the International Patient Experience Survey conducted in March-April this year. #PFBC #Fahrs #Neurology

BRC-supported research identifies new genetic cause of severe neurological disorders uclhospitals.brc.nihr.ac.uk/news/brc-suppo… Thanks to @UCLHresearch for supporting my clinician scientist trajectory

We are delighted to have become a member of @eurordis, we look forward to being better placed to represent the voices of people with #Fahrs / #PFBC

Fahr Beyond over the last 9 years has had a significant impact on raising the importance and profile of #FahrsDisease #pfbc Thank you to our fantastic community of people with Fahr’s, clinicians, care givers, & supporters. @aliciakearns @amitbatla @kailashbhatia @FraMagrinelli

Have you seen our report? Alliance urges action to ensure the NHS can deliver a rapidly expanding pipeline of neurological treatments. Learn more bit.ly/4slEarR

@MDC_IoN_UCL @QS_RareMD @FraMagrinelli @ABNTrainees @EANeurology @MedicsForRare @kailashbhatia @camraredisease @RDCworldwide @RDRUKHub @amitbatla @RareAction @RareDiseases @IonSynapse @NeuroAlliance @SEgenomics

Join us Thursday, May 28th at 3:00 PM (UK time) for a session with Dr Balck & Dr Magrinelli discussing the latest in #PFBC (#FahrsDisease). Don’t miss this chance to stay ahead in understanding this #raredisease, space is limited! For your ticket: eventbrite.co.uk/e/latest-updat…

Our gene discovery study implicating PSMF1 in early-onset PD and parkinsonism is now online in Nature Communications 🔗rdcu.be/fdDzv Grateful to an exceptional team and my funders What is made with patience carries its own quiet gravity @IonSynapse @kailashbhatia @UCLIoN @UCLIoN_DCMN @MDC_IoN_UCL @QS_RareMD @MichaelJFoxOrg @ParkinsonsUK @APDAParkinsons @UCLHresearch #TheDavidPearlmanCharitableFoundation

This evening we held our AGM, a really useful and insightful review of the last year, and exciting plans for the year ahead. A pleasure to welcome Abdullah, Eniola, and Patience as new members of the Board of Trustees. A big thank you to those renewing too. #Fahrs #PFBC

Only 3 days to go, if you haven't completed the survey please do so soon. Thanks 😊

UPDATE -Deadline Extended To maximise the opportunity for participants, we've extended the deadline to 15/04/26 Only 9 people away from meeting our target of 150. We urge you to take 5 minutes to be part of this study into the experiences of living with #fahrs/ #PFBC

Our Annual General Meeting is being held online on Wednesday, 15th April 2026 at 18:00-19:00 (BST). If you would like to attend, please email: adam@fahrbeyond.org

We are looking for two new #Trustees to join our board: 1 * Treasurer 1 * Technology/Social Media Lead Trustee Volunteer your time to make a huge difference to people living with #Fahrs/#PFBC Find out more: linkedin.com/jobs/view/4392…