Deborah page

[Paul Bronks @SlenderSherbet]

When you haven't understood a single word they said so you just smile politely.

[The PSP Association @PSPAssociation]

We have a range of resources to help you support your patients living with PSP or CBD. From publications, to support groups, support grants to our Helpline, find out more about how you can best support your patients: https://t.co/NylqiUdYfu #HealthProfessionals #PatientSupport

[The PSP Association @PSPAssociation]

Are you a health or social care professional supporting people with PSP or CBD? 🧠 We’re the UK’s only charity dedicated to these conditions. Download our new poster to see how we can help you and your patients—then share it with colleagues! 👇 https://t.co/ABtTytOCYq #Health

[The PSP Association @PSPAssociation]

We are sorry to hear of the passing of civil rights leader, Jesse Jackson, who was previously diagnosed with Progressive Supranuclear Palsy (PSP).

[Deborah page @Deborahjpage]

@PSPAssociation Dropped a copy off to our doctors today. We just need more professionals clued up on what to look for. X

[The PSP Association @PSPAssociation]

Are you a GP looking to support patients with PSP or CBD? 🧠 Our guide covers:

• Early diagnosis and referral
• Symptom management tips
• Multidisciplinary team involvement

Empower your practice—download the guide today: https://t.co/Rjo5NJOqds #PSP #CBD #GPs

[Robin Windsor @Robinwindsor]

Statement from The Windsor Family

Help if needed can be found at @CharitySANE and
https:/www.youareloved.org.uk

[Sophie Blake @sophieRblake]

Some of the incredible ladies from the Brighton & Hove secondary sisters group I co founded, have made this short plea to the government.
We are here. We are alive. Please see us.
On 5 February, Parliament will debate how people living with secondary (metastatic) breast cancer are treated in this country. For too long, we have been invisible.
We are not rare. Metastatic breast cancer is the biggest killer of women between 35-64.
We are not statistics that only appear once we’ve died.
We are tens of thousands of people living, right now, with incurable cancer.
Yet we are still only counted at death, not while we are living with complex needs, ongoing treatment, uncertainty, pain and fear. That invisibility shapes policy, funding, research priorities, and care, and it leaves us behind.
We are asking for something simple, but transformative.
Count us while we are alive.
Collect meaningful, accurate data on how many of us there are, how we live, and what we need. Use that data to inform research, services, workforce planning, and support.
Without this, we remain an afterthought.
Without this, our experiences are dismissed.
Without this, decisions are made about us, without us.
We are mothers, daughters, partners, friends, professionals. We are living with terminal illness, but we are still living. Our time matters. Our quality of life matters. Our voices matter.
This debate is a chance to finally acknowledge us, to stop erasing us, and to build systems that reflect reality, not silence.
We desperately hope that the debate at Parliament led by Clive Jones and Mary Foy, will change how Secondary, Metastatic stage 4 cancer patients are treated.
Please listen. Please act. Please count us.
We have been invisible for too long
#MetastaticBreastCancer #SecondaryBreastCancer #BreastCancer

[The PSP Association @PSPAssociation]

Our CEO James Cusack, and Research Coordinator Megan Hodgson are delighted to be at the ABN Movement Disorders Specialist Interest Group Conference in Brighton today. If you're in the area, stop by for a chat and pick up some helpful information! #ABNConference #MovementDisorders

[The PSP Association @PSPAssociation]

Remember, the PSPA is here to #support you and your patients. Take a look at our helpful #poster that shows the different areas of support you can access for yourself and your patients. You can also find out more on our #Healthcare Professionals Hub: https://t.co/hEeBoQE6Ri

[Sophie Blake @sophieRblake]

Hello @wesstreeting
Do you remember Hannah?
Yesterday was one of the hardest days as we said goodbye to the most remarkable, formidable and beautiful soul. She was just 39 years old and leaves behind a 5 year old daughter.
Hannah spent her final years living with Stage 4 metastatic breast cancer. Even while gravely ill, she campaigned tirelessly for access to #Enhertu and met you to eloquently and respectfully ask for your help.
You had, and still have, the power to stop this from happening.
Tragically, it is now too late for Hannah and her family. But please do not let her death be in vain. Act now so other women do not die prematurely from this cruel, relentless disease.
Secondary breast cancer is the leading cause of death of women aged 35–64 in the UK, that’s 31
women a day. These are mothers, daughters, partners, beloved friends and contributors to society, people with full lives still to live.
Please do something. We are begging you
@NICEComms @NHSuk @UKLabour @Keir_Starmer @AshleyDalton_MP @METUPUKorg @BreastCancerNow

[The PSP Association @PSPAssociation]

🎓In-person training: We’re heading to #Lincoln on 25 March to deliver training on PSP & CBD at the Petwood Hotel (LN10 6QG). Starts 1.15pm, with talks from leading experts including Dr Tim Rittman.

Register to attend at https://t.co/q9lMvXjC2a #training #pspaware #neurology

[The PSP Association @PSPAssociation]

🔬Announcement: We’re proud to fund @ProfMicheleHu (University of Oxford) through the Aileen and David Heath Memorial Grant as she develops a smartphone + AI tool to help distinguish PSP from Parkinson’s earlier in the disease course.
#PSP #MovementDisorders #NeuroResearch

[The PSP Association @PSPAssociation]

🔬 New research alert! This month, Dr. Filipa Henderson Sousa @BowlesLab begins a vital @PSPA-funded study into the breakdown of proteostasis in #PSP. By exploring how tau mutations disrupt protein balance in neurons vs. astrocytes, we're one step closer to targeted therapies🧬

[The PSP Association @PSPAssociation]

It's disappointing to hear the @CommonsLiaison are concerned by the slow progress being made by the UK Govt in reducing NHS waiting times. Currently it can take more than 3 years for someone to be diagnosed with #PSP or #CBD, we want better for our community. #NHS #Neurology

[The PSP Association @PSPAssociation]

Neighbourhood Health Centres are welcome; but without investment in neurology & therapy services, they won’t deliver the joined-up care PSP/CBD demands. Read more on what the budget means for people living with PSP & CBD: https://t.co/Ghrrmo8hdu #TheBudget #SocialCare #Neurology

[The PSP Association @PSPAssociation]

People with PSP & CBD wait an average of 2+ years for a diagnosis. Nothing in the Budget will help speed up the backlogs and delays in our healthcare system. #TheBudget #UKBudget #Healthcare

[The PSP Association @PSPAssociation]

If you're in or around the Norwich area tomorrow, why not go along to our Norwich Support Group's annual Christmas Fayre! The festive event will feature lots of fun activities including: tombola, raffle, delicious homemade treats and much more! #NorwichEvents #ChristmasFayre

[Karl Reid @Karl_Reid]

I try not to do Selfies with celebs too often on my train, but occasionally it’s someone I really do adore especially when they’re as nice in real life as they are when you see them on the screen. Was a little bit star struck today 😍 @gillinghamjoe

[Leeds Rhinos @leedsrhinos]

A huge thank you to HRH Prince William for keeping his promise to Rob to come back to Leeds and officially open the Rob Burrow Centre for MND, such a lovely occasion for the Burrow family to share with @KensingtonRoyal