Tag #Sma

Showing 1 to 5 of 5 results

t24.com.tr

🌐 85% Global Worthiness

Aug 24, 10:15

Istanbul Bans Donation Boxes for SMA and DMD Treatments

The Istanbul Governorate banned donation boxes set up to fund expensive treatments for Spinal Muscular Atrophy (SMA) and Duchenne Muscular Dystrophy (DMD), prompting outrage from families who say the ban hinders access to life-saving medications for thousands of affected children.

Istanbul Bans Donation Boxes for SMA and DMD Treatments

The Istanbul Governorate banned donation boxes set up to fund expensive treatments for Spinal Muscular Atrophy (SMA) and Duchenne Muscular Dystrophy (DMD), prompting outrage from families who say the ban hinders access to life-saving medications for thousands of affected children.

Progress

60% Bias Score

ShareSaveArticle

Good Health and Well-being

12345678

Previous 1 of 8 Next

What are the immediate consequences of the Istanbul Governorate's ban on donation boxes for SMA and DMD treatments?

The Istanbul Governorate banned donation boxes for SMA and DMD treatments, citing security concerns. Families are protesting, demanding either government funding for expensive treatments or the reinstatement of the donation boxes. Thousands of children with these genetic muscle diseases require costly therapies.

milano.repubblica.it

🌐 85% Global Worthiness

Apr 6, 22:10

SMA2 Patient Advocates for Increased Disability Funding and Inclusive Environments

Martina Zanon, a 23-year-old with SMA2, discusses her experiences navigating daily life, highlighting the need for increased funding for disability assistance and societal shifts in perspective towards disability and assistive technologies.

SMA2 Patient Advocates for Increased Disability Funding and Inclusive Environments

Martina Zanon, a 23-year-old with SMA2, discusses her experiences navigating daily life, highlighting the need for increased funding for disability assistance and societal shifts in perspective towards disability and assistive technologies.

Progress

32% Bias Score

ShareSaveArticle

Good Health and Well-being

12345678

Previous 1 of 8 Next

How does Martina Zanon's perspective on assistive devices challenge common misconceptions about disability?

Zanon's story challenges societal perceptions of disability. She uses assistive devices like a PEG tube for feeding, not seeing them as limitations, but as tools. Her experiences underscore the need to view assistive technology as extensions of the body, facilitating daily life rather than restricting it. This includes the need for social support and proper funding.

abcnews.go.com

🌐 85% Global Worthiness

Feb 5, 22:13

Spinal Cord Stimulation Improves Muscle Function in SMA Patients

A small study shows spinal cord stimulation temporarily improved muscle function in three adults with spinal muscular atrophy (SMA), offering hope for a new treatment for this progressive, incurable disease.

Spinal Cord Stimulation Improves Muscle Function in SMA Patients

A small study shows spinal cord stimulation temporarily improved muscle function in three adults with spinal muscular atrophy (SMA), offering hope for a new treatment for this progressive, incurable disease.

Progress

32% Bias Score

ShareSaveArticle

Good Health and Well-being

12345678

Previous 1 of 8 Next

What are the immediate impacts of spinal cord stimulation on SMA patients' motor function and mobility?

In a groundbreaking pilot study, three adults with spinal muscular atrophy (SMA) experienced improved muscle function and mobility after receiving spinal cord stimulation. The implanted device temporarily restored some muscle function, enabling participants to walk farther and stand more easily. This is the first evidence suggesting that this technology, already tested for paralysis, might also benefit neurodegenerative diseases.

pda.kp.ru

🌐 85% Global Worthiness

May 2, 07:16

Four-Year-Old Dies Despite Extensive Fundraising for SMA Treatment

Four-year-old Alisa Kochetkova from St. Petersburg, Russia, died on April 27th from spinal muscular atrophy (SMA) type 1, despite her family's three-year effort to raise 155 million rubles for Zolgensma treatment and ongoing care including Spinraza.

Four-Year-Old Dies Despite Extensive Fundraising for SMA Treatment

Four-year-old Alisa Kochetkova from St. Petersburg, Russia, died on April 27th from spinal muscular atrophy (SMA) type 1, despite her family's three-year effort to raise 155 million rubles for Zolgensma treatment and ongoing care including Spinraza.

Progress

60% Bias Score

ShareSaveArticle

Good Health and Well-being

12345678

Previous 1 of 8 Next

What systemic issues contributed to Alisa's death, considering the high cost of Zolgensma and the family's efforts to obtain it?

Alisa's case highlights the challenges faced by families dealing with rare, expensive diseases. The family's tireless fundraising efforts, encompassing various charitable organizations and personal sacrifices, underscore the desperate measures taken to save a child's life. Despite their efforts, the high cost of Zolgensma and the unpredictable nature of SMA proved insurmountable.

mk.ru

🌐 85% Global Worthiness

Feb 27, 13:14

Progress and Challenges in SMA Treatment in Russia

A February 19th press conference in Moscow discussed Russia's progress in SMA diagnosis and treatment, revealing 1,511 registered patients (1,004 children, 507 adults), over 95% newborn screening coverage in 2023, and the availability of three treatments including a domestic generic.

Progress and Challenges in SMA Treatment in Russia

A February 19th press conference in Moscow discussed Russia's progress in SMA diagnosis and treatment, revealing 1,511 registered patients (1,004 children, 507 adults), over 95% newborn screening coverage in 2023, and the availability of three treatments including a domestic generic.

Progress

56% Bias Score

ShareSaveArticle

Good Health and Well-being

12345678

Previous 1 of 8 Next

How are patient advocacy groups and government initiatives contributing to improved SMA care in Russia?

Early diagnosis through expanded newborn screening and the availability of three treatments, including a domestic nusinersen generic, have improved SMA patient outcomes in Russia. Over 700 children are receiving treatment, with 75 using the domestically produced drug. The focus is now on managing patient expectations regarding treatment efficacy and timelines.

Showing 1 to 5 of 5 results