Advocacy August

[vanessa-vaile]

Joining the PHA Facebook groups to facilitate sharing would be another good starting point. Also I can’t help but think making common cause with related (pulmonary, cardiac, etc) other rare groups would increase numbers and with that reach and potential influence. I’ve been doing online advocacy for 20 years now and have learned that when elections around the corner, politicians count voters.

PS did you know that, starting with the question mark all the way to the end, you can trim URLs from newsletters and email alerts? That extra code, aka garbage code, is on there for tracking purposes.

[Colleen]

Vanessa, thank you for the additional advocacy information! Most of all, thank you for being an active advocate for 20 years! I hope more people follow in your footsteps.

No, I did not know that about the URL’s! That is knowledge I will put to use from now on. I edited the post…much better. Thank you!

[vanessa-vaile]

PS see https://phassociation.org/pha-launches-three-new-facebook-groups-to-support-the-ph-community/ for a list of FB groups.

[brittany-foster]

Thanks so much for this information. I was actually just participating in an online poll about social media use and advocacy for rare diseases and I ranked Facebook as being one of the top social media outlets to raise awareness. Others that I included were Instagram and Twitter. I have made a lot of amazing connections through these sites and they reach across all age groups. I also use Facebook and some of the pages that I am an admin of to raise awareness and education! That’s so important. As Colleen said, thank you for being a part of advocating for the last 20 years. That’s incredible.

[jen-cueva]

So true, Colleen! When our local Representatives are in their local offices is a great time to try and catch them. I also find that their assistants are more likely to talk to me at these times. During this time , I’ve often been able to at least talk to the assistants and educate on PH and several have wanted to know more so I was able to email them PH educational information as well as a short version of my personal story.

[brittany-foster]

Jen,
Personal stories are so powerful. Especially when you are the one sharing your own story. When they put a face to the disease and are actually thinking of a person and not just a number or statistic, it makes much more of an impact and becomes something they NEED to address and CAN’T ignore. I’m a big fan of telling our stories as publicly as possible and saying “PH looks like me too”. It spreads a lot of awareness for rare and invisible illnesses.

[jen-cueva]

Yes, I think having a name and/or face with our personal stories and what living daily with PH is a huge impact for our local Representatives. Every little step is just one step closer and one more person we have educated .

Lol, Brittany, yes, whispering doesn’t work!Hehe

Thank you all for all you’re doing to educate and advocate.
Together , we will get PH out there , even one by one!

[Colleen]

Jen, every little step as individuals that we take to advocate for PH is helping to move this rare disease forward into the hearts and minds of people who have to power to take the big steps towards diagnosis, treatment and a cure. Ditto to what Brittany said, she worded the significance of our personal stories perfectly.

[brittany-foster]

So true Colleen!
Every little step counts , even if it seems “little” at the time, these can eventually lead to the bigger changes that we wajt to see happening. I say we all keep speaking up amd raising heck! Nobody gets what they want by whispering lol!

[jen-cueva]

Just wanted to remind everyone that it is now, Advocacy August.Let’s try to reach out to our elected officials and share our stories. As Colleen shared above, PHA offers some resources to help you achieve this.

Here is the link again, so you can click and complete the steps this Advocacy August.

[jen-cueva]

Hey y’all, it’s that time of year again. It’s Advocacy August, and we want to see how you work on advocacy in your area.

I’ve already contacted my local congress and heard back from a few. I plan to do my advocacy work online. But I hope to do more in person one day because I enjoy that, too.

A fellow PH Columnist, @mike-naple, lives in the D.C. area, so I imagine he will be doing in-person contact throughout the month and year. He’s quiet here because he works outside BN, too, but he packs a punch, and his columns are so informative. You can check his work out here.

Thanks to Mike and all of you for the tiny step you take in advocacy adds to bigger things. So, what are your plans for this Advocacy August?

[mike-naple]

Jen, you’re too kind with your words! Thanks for the shoutout. It is, indeed, Advocacy August. There is a lot happening on Capitol Hill in Washington, DC where Congress hopes to pass some legislation prior to breaking for the August recess. I’m, in fact, doing some work around the health care provisions the Senate included in their recent version of the reconciliation bill.

There are so many different ways to be an advocate and many ways to action: in-person meetings, phone calls to your representatives, visit to representatives’ offices in their home districts where you live, social media actions, and rallying folks to your communities to also engage in advocacy activities.

I will hopefully participate in a few digital or remote advocacy actions on behalf of the PH community. It can be a little frustrating living in DC because I don’t have full representation in Congress, however, we make it work and find the avenues to advocate where they exist.

I would encourage everyone to get involved in a manner and way they feel most comfortable. I would also encourage people to share their stories of when they engaged in advocacy. It can be scary to meet with your elected representative or their staff for the first time. Hearing prior successes from folks who have advocated in front of their member of Congress (or called their office) is a great way to lower a barrier of entry for people who are new to advocacy.

[jen-cueva]

Hey, @mike-naple, you’re always an excellent resource, and your columns share beneficial information. You make it easy to say such kind things.

Thanks for your feedback and for reminding others to get involved and talk to their members of Congress. I started at the city level in Texas, then branched to county, state, and Congress.

Because I’m new to San Diego, I’m learning about my new representatives by email and phone and hope to land an in-person meeting eventually. I find that giving them a face to connect to a story has much more punch, and often they remember it better. If you have any connections, feel free to introduce me; hehe.

I have a few calls and more emails to send out this month. Hopefully, when PH Awareness Month rolls around in November, I’ll be more familiar with everyone here.

Thanks again. Enjoy the rest of your week, my PHriend.

[jen-cueva]

Our very own PH columnist @mike-naple has done it again. You may want to read his informative column and see how you can raise your voice to support the Safe Step Act.

Mike continues to be an intricate part of advocacy for those of us in the PH community. We are greatly appreciative of his time, voice, and passion.

Check out his column in the link below and share how you plan to help this Advocacy August. Tell your story. Our local representatives need—names and faces to help them remember why you ask for their support.

Join me this August in advocating for those who have PH

Can we count on you?