Spinraza : Next steps

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

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3 days ago

Aux membres de la communauté de l’amyotrophie spinale (AS),

Pour donner suite à votre demande de mises à jour et de faits nouveaux relatifs aux études cliniques sur l’AS, nous avons souhaité vous faire part des nouveaux résultats de l’étude NURTURE chez les patients atteints d’AS au stade présymptomatique traités par le nusinersen (SPINRAZA MC ) qui ont été présentés ce mois-ci lors de la rencontre sur la recherche et les soins cliniques organisée virtuellement par
Cure SMA (États-Unis). Les nouvelles données comprennent près d’un an de suivi supplémentaire pour les participants à l’étude NURTURE, l’étude la plus longue à ce jour chez les enfants atteints d’AS qui sont traités au stade présymptomatique.

Les résultats de cette étude ouverte de phase II en cours montrent que SPINRAZA procure aux participants des bienfaits durables pendant une période pouvant aller jusqu’à 4,8 ans avec un traitement précoce et continu; tous les participants sont demeurés vivants sans avoir besoin de
ventilation assistée continue. L’analyse est fondée sur l’examen de 25 patients atteints d’AS diagnostiquée par analyse génétique (les plus susceptibles de présenter une AS de type 1 ou 2) au stade présymptomatique qui ont reçu la première dose de SPINRAZA avant l’âge de six semaines.

L’étude a été prolongée de trois ans, ce qui a permis à Biogen d’évaluer l’efficacité et l’innocuité à long terme de SPINRAZA chez les patients jusqu’à l’âge de huit ans et de mieux comprendre l’effet du traitement précoce.

Des renseignements supplémentaires concernant les nouveaux résultats de l’étude NURTURE sont
accessibles ici. De plus amples renseignements sur l’étude NURTURE (NCT02386553) sont accessibles sur
le site clinicaltrials.gov. Si vous avez des questions concernant ces données ou l’étude NURTURE, veuillez communiquer avec un médecin qui traite l’AS.
Cordialement,

Biogen Canada

investors.biogen.com/news-releases/news-release-details/new-results-landmark-nurture-study-show-p... ...

New Results From Landmark NURTURE Study Show That Pre-Symptomatic SMA Patients Treated With SPINRAZA® (nusinersen) Continue to Demonstrate Sustained Benefit From Treatment | Biogen

investors.biogen.com

The Investor Relations website contains information about Biogen's business for stockholders, potential investors, and financial analysts.

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Cure SMA Canada

3 days ago

Dear members of the SMA community,

As a follow up to your request for SMA clinical study updates and developments, we wanted to sharenew results from the NURTURE study of pre-symptomatic patients with SMA treated with nusinersen (SPINRAZA ™ ) that were presented this month at the international Research & Clinical Care Meeting held
virtually by Cure SMA (USA). The new data include nearly a year of additional follow up for NURTURE study participants – the longest study to date of children with SMA who are treated pre-symptomatically.

Results from this ongoing, Phase 2, open-label study demonstrate sustained benefit for up to 4.8 years with early and continued treatment with SPINRAZA with all participants alive and free of permanent ventilation. The analysis is based on an examination of 25 pre-symptomatic patients with the genetic diagnosis of SMA (most likely to develop SMA Type 1 or 2) who received their first dose of SPINRAZA before six weeks of age.

The study has been extended by an additional three years, enabling Biogen to evaluate the longer-term efficacy and safety of SPINRAZA in patients up to eight years of age and further understand the impact of early treatment.

Additional details regarding the new results from NURTURE study are available here. More information on the NURTURE study (NCT02386553) is available on clinicaltrials.gov. If you have any questions about this data or the NURTURE study, please reach out to a treating SMA physician.

Sincerely,
Biogen Canada

investors.biogen.com/news-releases/news-release-details/new-results-landmark-nurture-study-show-p... ...

New Results From Landmark NURTURE Study Show That Pre-Symptomatic SMA Patients Treated With SPINRAZA® (nusinersen) Continue to Demonstrate Sustained Benefit From Treatment | Biogen

investors.biogen.com

The Investor Relations website contains information about Biogen's business for stockholders, potential investors, and financial analysts.

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Cure SMA Canada

1 week ago

Help Us Help You!

Cure SMA Canada has relied on the funds raised from the Rebecca Run for 19 years to fund research, support families and advocate for treatment. We were very worried when the Covid 19 pandemic became a reality. We knew it was going to have a huge negative impact on Cure SMA Canada. The fear was replaced by determination and the decision to go forward in the hopes our national SMA community could come together to support the race virtually.

C'mon SMA Canada families and friends! Help us help you!

The annual Rebecca Run for SMA brings us all together—a caring community in support of Cure SMA Canada and families living with Spinal Muscular Atrophy.

Due to COVID-19, it is essential that we keep our community safe and that is why the 2020 Rebecca Run for SMA is going 100% virtual and national!

We are happy that we have found a way to keep our 19-year tradition going strong with this new format.

It’s taken some time to think about the right way forward, as this is all about raising funds for kids and adults with SMA. While we’re disappointed that we can’t be together at Fairy Lake and run along our scenic route together, our new virtual run format means there will still be a 2020 Rebecca Run for SMA!

The virtual Rebecca Run for SMA is a great way to get outside (while social distancing) and run your 5k - your way anytime between July 4 - 25. We have a Virtual Kids' Fun Run to keep the kids active and moving in these challenging times.

We mail your run shirt and finisher medal right to your door. You can also upload and share your run photos and results!

Join us virtually and register today! Online registration closes Friday July 24.

Help us reach our fundraising goal of $100,000 this year for Cure SMA Canada! Your support not only helps families living with SMA, it also helps fund the research to find a cure for SMA.

It's easy to get started. Just set up your fundraising page and spread the word! Share it on your social media channels, email friends, family, coworkers, host a fundraising zoom party, or garden party all to support Cure SMA Canada.

We have many exciting new incentive prizes for 2020. Raise $250 and you'll run for free and more! Click below to learn more about fundraising at the Run.

www.rebeccarun.com ...

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Cure SMA Canada

2 weeks ago

SMA Family Camp

Fun! Prizes! Friends and Family!
Attend camp from your own home!
Lets do this together....apart!!

This year, we are going NATIONAL and VIRTUAL!

Dear SMA Community,

This year Cure SMA Canada's Family Camp will be offered virtually due to the current pandemic. The goal of the virtual camp is for family fun, to be educational, and inclusive.

How virtual SMA family camp works: Registrants will receive their camp supply package in the mail. The package will contain numbered activities planned for the group in which the families signed up for, and corresponding with the agenda and dates.

Who can register : Any family who has a child or parent/care giver affected by SMA.
Registration for SMA camp will open June 20, 2020 at 9:00am PDT. All registrations must be received by June 30, 2020 by 3:00pm PDT.

Cost per family: $50 per family, paid by cheque or credit card to Cure SMA Canada.
Cure SMA Canada has a limited amount of scholarships for the virtual camp. If you would like a scholarship form please email smacampwest.curesma@gmail.com

If you would like to attend, please register by clicking on the link below.

If you have any questions please do not hesitate to contact the Camp Director, Holli Vander Wyk, at smacampwest.curesma@gmail.com.

We hope you attend!! We will do everything we can to make this an inclusive, family oriented and SMA community building event!

Holli Vander Wyk

SMA Camp (West) Camp Director ...

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Cure SMA Canada

2 months ago

We at Cure SMA Canada hope your families are staying healthy, safe and happy. We have received a wonderful response for the Covid-19 packages and are excited about the support these packages will give to our SMA families.

Due to limited supply, all requests for a package for your family will need to be received by Saturday May 16 at midnight.

To receive a package please send an email to curesma@telus.net with the subject "please send us smiles" in the body please list the members of your family with their ages, gender and for the sma affected family member please also state the type of sma.

For the families that have already submitted their request, your smiles will be on your doorstep very soon!!

We hope these packages put a smile on your face! ...

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Spinraza : Next steps

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