SMA News Today Forums | TIARA | Activity https://smanewstoday.com/forums/members/tiara/activity/ Activity feed for TIARA. Sun, 26 Apr 2026 15:52:21 -0500 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 40ba70480b308e85e3174d23d820e373 TIARA replied to the discussion Urgent: SMA Type 1 infant – Zolgensma access blocked due to cost in the forum Treatments and Research https://smanewstoday.com/forums/forums/topic/urgent-sma-type-1-infant-zolgensma-access-blocked-due-to-cost/#post-33209 Wed, 24 Dec 2025 03:05:21 -0600 Reply to Urgent: SMA Type 1 infant – Zolgensma access blocked due to cost

Hi Alyssa,

Thank you so much for taking the time to respond and for sharing this information. I truly appreciate it.

I will definitely reach out to the Boston Children’s Hospital SMA Program to see if they may be able to guide us regarding international patients or possible pathways for treatment.

Thank you again for your kindness and support.

]]> 74d8eaa2d412ab31f388be34c5d30f01 TIARA replied to the discussion Urgent – Infant with SMA Type 1, treatment access blocked due to cost in the forum Parents​ ​and​ ​Caregivers​ https://smanewstoday.com/forums/forums/topic/urgent-infant-with-sma-type-1-treatment-access-blocked-due-to-cost/#post-33208 Wed, 24 Dec 2025 03:00:51 -0600 Reply to Urgent – Infant with SMA Type 1, treatment access blocked due to cost

Hi Kevin,

Thank you very much for your response and for taking the time to guide me.

I have already reached out to Cure SMA and received an initial response. I am continuing to follow up with them and hoping they may be able to guide us further or connect us with additional resources.

I truly appreciate your support and recommendation. Thank you again.

]]> d9290f3aed0a31b2231b00cdd389d269 TIARA posted a new activity comment https://smanewstoday.com/forums/activity/p/19800/#acomment-19810 Wed, 24 Dec 2025 02:58:48 -0600 Hi Alyssa,

Thank you so much for your kind message and for welcoming me to the forum.

I truly appreciate your support. I am the father and caregiver of an infant diagnosed with SMA Type 1, and we are urgently seeking any guidance regarding early or managed access programs, international treatment pathways, or nonprofit/charity support.

Due… Read more

In reply to - TIARA became a registered member ]]> 0c8f38864f7d251c65898f8e0c3ae528 TIARA replied to the discussion Urgent: SMA Type 1 infant – Zolgensma access blocked due to cost in the forum Treatments and Research https://smanewstoday.com/forums/forums/topic/urgent-sma-type-1-infant-zolgensma-access-blocked-due-to-cost/#post-33204 Tue, 23 Dec 2025 03:37:35 -0600 Reply to Urgent: SMA Type 1 infant – Zolgensma access blocked due to cost

Hello everyone,

Just following up in case anyone has experience with early or managed access programs for SMA Type 1, or international pathways for Zolgensma.

Any guidance or even a small direction would mean a lot to our family.

Thank you again for your time.

]]> f93e933a7fb3678c640177da4bb1baa5 TIARA started the discussion Urgent: SMA Type 1 infant – Zolgensma access blocked due to cost in the forum Treatments and Research https://smanewstoday.com/forums/forums/topic/urgent-sma-type-1-infant-zolgensma-access-blocked-due-to-cost/ Tue, 23 Dec 2025 03:24:24 -0600 Urgent: SMA Type 1 infant – Zolgensma access blocked due to cost

Hello everyone,

I am a father from Iran and caregiver of an infant with SMA Type 1.

Our doctor says funding must be secured before contacting Novartis for Zolgensma, which makes access impossible for our family.

Our case is registered in hospitals in Dubai and Qatar.

Has anyone here accessed:

• Early / Managed Access programs

• international…

Read more

]]> 2398974dff8dedd39f9fbc2680dfde1c TIARA started the discussion Urgent – Infant with SMA Type 1, treatment access blocked due to cost in the forum Parents​ ​and​ ​Caregivers​ https://smanewstoday.com/forums/forums/topic/urgent-infant-with-sma-type-1-treatment-access-blocked-due-to-cost/ Mon, 22 Dec 2025 19:53:55 -0600 Urgent – Infant with SMA Type 1, treatment access blocked due to cost

Hello everyone,

I am a father from Iran and the caregiver of my baby girl diagnosed with SMA Type 1.

Her medical case is registered at multiple hospitals (including Jalila Children’s Hospital in Dubai and Sidra Medicine), but she has not been accepted for life-saving treatment due to the extremely high cost.

We are facing a situation where access…

Read more

]]> a99e0ba27a477382c1b2be4c2895ea4c TIARA became a registered member https://smanewstoday.com/forums/activity/p/19800/ Mon, 22 Dec 2025 14:49:17 -0600 2