Zolgensma for Lennon –
Debbie Blair is a Unifor Member who works at FirstOntario Credit Union, she contacted me last week and asked for our help and support for her Granddaughter Lennon Ferri. Lennon who just turned one in September this year is in a fight for her life. Debbie told me that when Lennon was only four months old she was diagnosed SMA TYPE 1 (spinal muscular atrophy) which is a very rare genetic disease with no known cure at this time. As you can imagine the whole family’s world was completely turned upside down.
Lennon was the first baby girl in Ontario to receive “Spinraza” and this treatment has slowed the progression of the disease. Recently there has been a new development, a new drug is on the market, it is called Zolegensma. This new drug is currently labeled the most expensive drug in the world. The cost of this onetime treatment is $2,125,000.00 USD.
Lennon has only been with us for a year and has fought so hard to overcome many hurdles. We want to help her have the best life possible and we are asking our members to consider making a donation to the Lennon Ferri’s go fund me page. I am encouraging all our members to read and share Lennon’s story. We understand that that not everyone is in a position to donate, however it is also important that we educate ourselves about the disease and the need for gene therapy.
Funding and education is of the utmost importance to Lennon’s entire family and any other family that has been impacted by this disease.
To learn more Click her to go to Lennon’s Page
Greg Brady, President Unifor Local 199