About
Helpline (phone, email, face-to-face, NHS clinic referrals — top topics: alert cards, welfare, emotional support, housing, peer support); Advocacy Service (PIP, housing, care packages — 152 people); Cost-of-Living Grants (470 people); Joseph Patrick Trust equipment grants (53 people); Tailored therapeutic support groups (4 groups, counsellor with lived experience); Peer support WhatsApp groups (108 people); Regional Muscle Groups (33 meetings, 315 people, 10 regions); Information Days and Scottish Conference (162 attendees); Virtual information webinars (7 events); Employability Programme (16 people supported); Changing Places Consortium co-chair (324 new toilets registered); 5 Neuromuscular Regional Networks; Allied Health Professionals Conference (155 attendees); Neuromuscular Care Advisor Conference (80% workforce attendance); Health professional e-learning and webinars; NICE/SMC treatment appraisals; Parliamentary muscular dystrophy groups (England, Scotland, Wales, Northern Ireland); RHS Chelsea Flower Show Forest Bathing Garden (May 2024); Bidwells 10k Town and Gown running series (7,500+ participants, £360,000 raised, carbon neutral); Family Funds network Custom geography from upload: UK-wide (headquartered in London)
Key Metrics
Key Outcomes
- SMA added to NHS newborn screening 'in-service evaluation' following MDUK co-secretariat work with UK SMA Newborn Screening Alliance; two treatment appraisals resulted in NHS approval; RHS Chelsea Flower Show garden secured to raise awareness with new audiences
- MDUK Oxford Neuromuscular Centre five-year anniversary — grew from 0 to 20+ clinical trials since 2019 with £1.2 million investment; PIF TICK Quality Mark accreditation secured; Bidwells 10k became carbon neutral event through Bidwells' offset commitment
- 1 in 600 people in the UK live with a muscle wasting or weakening condition; brand refresh grew website visits by one third (530,000 visits) and Facebook reach 140% to 3.2 million; total expenditure £8,042k with support costs at 10%
Geography
UK-Wide
