Spinal Muscular Atrophy

Speak’s fundraising initiatives secure funding for medical treatments and comprehensive care services for Spinal Muscular Atrophy (SMA) patients.
Efforts include strategic partnerships, influencer campaigns, and community engagement to support individuals with SMA.
The “Access to Treatment for Patients suffering from Rare Diseases” program advocates for SMA patients, promoting policy changes to improve treatment access.
Evidence-based advocacy with stakeholders addresses the unique challenges faced by SMA patients.
Speak provides treatment and medical assistance to SMA patients.
Public awareness initiatives focus on educating the community about Spinal Muscular Atrophy through campaigns, workshops, and media engagement.
Speak leverages mainstream and social media to raise the voice for SMA patients and their needs.
Research efforts aim to generate evidence on the challenges of SMA, using findings to enhance advocacy and public awareness initiatives.
Speak’s research supports the development of targeted interventions and policy recommendations.
Training programs are designed for staff and stakeholders, focusing on SMA to ensure informed and effective support for patients.
Speak’s contextualized training enhances the capacity of those working with SMA patients.

Treatment

While there is currently no cure for SMA, there are treatments available that can help manage symptoms and improve quality of life. Recent developments have resulted in adherence of a safe virus which delivers a fully functional human SMN gene to the targeted motor neurons. On the prevention side, genetic testing and counseling can help families understand their risk of passing on the condition to their children and make informed decisions about family planning. With early diagnosis and treatment, individuals with SMA can live longer, more fulfilling lives.

Weight	Dose	Days/bottle (60 mg)	Days adding Free Bottles	Cost/Bottle	Monthly	Quarterly	Yearly
20+	5 mg/day	12	60	PKR 1,115,569	PKR 565,532	PKR 1,696,595	PKR 6,786,378
14	3.53 mg/day	17	85	PKR 1,115,569	PKR 399,199	PKR 1,197,596	PKR 4,790,385
08	2.03 mg/day	29	145	PKR 1,115,569	PKR 234,013	PKR 702,039	PKR 2,808,157

Spinal Muscular Atrophy

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