From our founder, Aimee Powell:
As many of you know, I founded the Pheo Para Project to raise awareness after the death of my brother John. Our motto is “Building hope, one story at a time…” I believe the positive changes we see in the world, whether large or small, are the result of an accumulation of small actions taken every day by ordinary people hoping to move the world in an extraordinary direction.
My experience as an advocate, for my family and so many others within our community, has shown me that one of the biggest and most urgent challenges the pheo para community faces remains the lack of informed local care. While we (rightfully) continue to advocate for measures which might address this within the educational system at schools of medicine around the world, I believe we can jump-start the process through a grassroots information campaign which targets providers in communities around the world.
The Six-Month Challenge to Change the World challenges pheo/para patients, caregivers, and allies to reach out to medical professionals in their communities with current information on pheochromocytoma/paraganglioma.
I’m asking that every participant pledge to personally contact one healthcare professional per month from July through December, for a total of six each.
Imagine the number of providers we could reach!
I have created a virtual packet for the campaign, which includes
- An introductory letter which introduces you and explains the purpose of your contact (templates provided)
- A fact sheet on pheo/para
- A flyer promoting Pheo Para Awareness Week
- A list of resources which provide up-to-date information on pheo/para diagnosis and treatment
- Educational resources for HCPs
- Patient Resources.
When putting together your packet, please consider organizing them in the order listed below. As always, feel free to contact us if you have questions, or difficulty downloading the documents.
Patient Letter Template or Ally Letter Template
Pheo Para Awareness Week Flyer
Pheo Para Fast Facts
Diagnosis and Management Resources for HCPs
Educational Resources for HCPs
If possible, those living in the same metropolitan areas should coordinate on points of contact (I can facilitate). Those living near current or potential centers of excellence should look for contacts not currently affiliated with those institutions
Remember that many professionals can be contacted via email, which makes your job easier! If necessary, I can supply printed materials to those who need them. I am also happy to assist in identifying points of contact.
I’ll be out there, doing this along with you — and I’ll be posting updates online as I go. I invite you each to do the same.
Let’s change the world!