Spinraza : Next steps

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Spinraza : Next steps

Spinraza next steps. The following diagram outlines costs and benefits.

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6 days ago

Looking for ways to shop small and give gifts that give back this holiday season? Beautiful Complicated is an online shop of modern, handmade goods made with a purpose. Cristina (the founder and creator) has SMA and while her physical health is complicated, her life is also made up of beautiful moments and experiences. With the help of her family, each item has been handmade and designed to give individuals the opportunity to embrace their own beautiful, complicated life.Partial proceeds of every sale goes to Cure SMA Canada in order to advance research and support programs for individuals and families with an SMA diagnosis. Last year, Cristina raised over $800 for Cure SMA Canada support programs and she hopes to surpass that total this year! Cristina is setting a goal to raise $1000 and is currently at $650. Follow Beautiful Complicated to connect with Cristina and find out how you can get involved. You can also visit her Etsy store at www.beautifulcomplicated.etsy.com to find these items and more just in time for the holiday season!.#giftsthatgiveback #shopwithpurpose #beautifulcomplicated #shopsmall #shoplocal #smafundraiser #spinalmuscularatrophy #musculardystrophy #chronicillness ... See MoreSee Less

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Cure SMA Canada

2 weeks ago

Request for survey participation! We are looking to speak to patients and caregivers/parents of patients living with Spinal Muscular Atrophy (SMA) between the ages of 12 and 17 that would be interested in sharing their experiences living with this condition. We are looking to speak with caregivers of patients who are based in Canada to take part in an online survey to learn from their experiences.The objective is to understand the treatments experiences of someone living the condition and the burden of the disease. Specifically, we would like to understand what is it like to live with the condition, attitudes towards the condition, the patient journey, perceptions of treatments, and views on the challenges and any unmet needs. This information will help us to develop a deeper understanding of how patients think about, orient to, and make decisions around treatment for their illness along with health care professionals. 🔒Information shared will be treated confidentially and reported in aggregate form only. ⏱Participants will be asked to participate in an online survey which will last approximately 30 minutes. 💰As a token of our appreciation, we will be offering an incentive of 65 CAN$ in recognition of their willingness to share their story with us, paid via Amazon voucher or bank transfer. 10% of the incentive (or more if they wish) will be donated to a registered charity.We would not be asking you to share any personal information of your members with us but would we would ask if you would be able to share details (Landing page link: www.liberatingsurveys.com/en/enquire/632) of the study with your members and should they be interested, they can contact us directly. We are mainly looking to invite parents/legal guardians of someone living with SMA aged between 12 and 17 year old.www.liberatingsurveys.com/en/enquire/632/orgchcsma ... See MoreSee Less

Help Spinal Muscular Atrophy (SMA) Research

www.liberatingsurveys.com

Take part in a 30 min online survey & earn 65 CAD

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Cure SMA Canada

1 month ago

Save the date!✨Our BC chapter is hosting a holiday party on December 11 from 12-4pm in Vancouver! Join us for lunch, holiday games, a visit from Santa, and more! ... See MoreSee Less

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Cure SMA Canada

1 month ago

Wishing our community a happy and safe Halloween 💜🎃💜 ... See MoreSee Less

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Cure SMA Canada

2 months ago

Most parents take their children’s swallowing ability for granted. But this ability, also known as bulbar function, is more vital than could ever be imagined for those living with SMA. For parents of children like Chloe Sousa, it’s important to consult with a neurologist. youtu.be/F3acxOWKlzM ... See MoreSee Less

Understanding Bulbar Function: Chloe's Story

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Most parents take their children’s swallowing ability for granted. But this ability, also known as bulbar function, is more vital than could ever be imagined...

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Spinraza : Next steps

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