Name: Danielle Weil
Connection to CF: Mother to 3 year old daughter with CF
Years advocating: 3 years of advocating (and counting)
Why did you get involved with CF Canada’s advocacy program?
I got involved with CF Canada’s advocacy program because I felt it was a good way for me to take some control over what I could do for my daughter and others living with cystic fibrosis. I was a new mom to twins (her twin sister does not have CF) and feeling lost and overwhelmed not only by the change in our family dynamic but also with the new, totally unexpected diagnosis. Becoming an advocate gave me a voice in a stronger, more impactful way than just posting our experience over social media or educating those we met along the way- I am now able to participate at the provincial and federal levels making a real impact for all Canadians affected by CF. I am proud that I can look my daughters in the eye and tell them that I am doing everything within my power to change things for the better so that they get their full lifetime together in good health, and hopefully eventually make a true difference not only for CF patients but for all people living with a rare disease in Canada.
Describe your fondest memory as a CF advocate so far.
My fondest memory to date as an advocate is probably our trips to Queens Park over the last few years, namely the 3 day period in May 2019 that saw a large group of advocates meeting with over 40 MPPs to push for access to medications. It was an amazing experience to sit with so many elected officials to share our stories, answer their questions, and hear them advocate for us in the Question Period but it was also truly incredible to spend those days with fellow advocates. With CF being such an isolating disease, having the chance to meet other caregivers, parents, and individuals living with CF and share our mutual experiences, feelings, and frustrations has helped me to form friendships like no other. So many of our friends and family share the experience of having children, but having a child with a rare disease is not something that many people can relate to so spending time with other CF parents was very special to me.
What would access to Trikafta and other CF modulators mean to you?
Access to a CF modulator, whether it is Trikafta or something else that would work for my daughter’s mutations, would quite literally be the miracle that our family has hoped for since her diagnosis. From the day that she was diagnosed, our daughter’s team has assured us that miracles are right around the corner for CF patients, and while we have held onto that hope just like generations of parents before us, we have also taken that promise with a grain of salt. To see these breakthrough treatments actually come to fruition in our generation and potentially be available to our children at such an early age, to know that they may be the first generation to not suffer the devastating health decline- it’s indescribable. It means that we know our girls will be able to grow up together and have the same opportunities, instead of knowing that one may be limited by her failing health. It means that we know we likely will be outlived by all of our children instead of the opposite. It means not having to worry about the likelihood of her needing a lung transplant and knowing that for that to happen, another family must suffer the unthinkable.
What message would you like to give to your provincial government on behalf of the CF community in Canada?
I would like our provincial government to know that we are not going to back away from this fight. We have been fighting for access to medications for many years and though there have been small victories along the way, the biggest fight is yet to come. They have a responsibility to their constituents to provide, and we have a responsibility to our friends, family, and fellow CF community members to put everything we have into the fight. To us, this is a simple answer- these medications work, and they are desperately needed. To continue to delay and make it a matter of money is irresponsible, deadly, and unforgivable.
What advice would you give to a new volunteer advocate?
To new advocates, I believe the most important thing to remember is that your story is unique and is your most important tool in your fight. Many people will find it intimidating to consider what an advocacy role entails or feel overwhelmed at the possibility of meeting with a member of parliament and that is totally normal! Just remember that they are in their position for YOU, and it is their job to hear you and help you in your objective. They are human just like you are, and more often than not they are parents, siblings, friends, etc of people with a story of their own. Your story and experience are important because they open a door into your world, and that is needed to impress upon our government officials that our fight is important and they need to help us.
Want to advocate for cystic fibrosis medicines?Join Cystic Fibrosis Canada's National Advocacy Network