2 0 2 3 Community Meeting Image

Virtual Family Conference Brings Global Community Together

What a joy it was to see so many of your faces! On Saturday, March 11th, more than 85 people joined our Virtual Family Conference that brought our community together around the world. There were introductions of our JGA Team with updates on our high-level goals for the year, a message from our Co-Founder Joe Lang and research updates from Dr. Wendy Chung.
 
We also debuted our brand new JGA video! It’s now available in English, French, Spanish, German, Italian and Arabic on our YouTube channel

Here is the English version to get you started: https://www.youtube.com/watch?v=4BgBOYa2Suo.

2 0 2 3 Community Meeting Image

Some takeaways and action items for our community:
 
-Please sign up with Simons Searchlight. This is imperative as we move to clinical trials. This information will help move the research forward and the numbers help with the negotiations with pharmaceutical companies. Now is the time, please don’t delay. (If you have any questions, there are step by step instructions on our private family Facebook page.)
 
-Dr. Chung and the Columbia team went over the medical history data from Simons Searchlight and the data collected at the JGA 2022 Family Conference in New York. Collected data from the children who were in attendance match the reported data in Simons Searchlight which indicates the tests utilized were good measures to use going forward.
 
Thank you to all of you who could be there and for those who were not able to be, don’t worry, here is a link so you can get caught up! We are all looking forward to seeing you again soon.
 
Click here for the recording of the conference in case you missed it: https://www.youtube.com/watch?v=z-WScYIewKQ.

Published

March 23, 2023

Share

IMG_2360-min

JGA Team Members Attend Rare Disease Week on Capitol Hill

Each year on the last day of February, rare disease advocates don their zebra print and head to Washington DC to support rare disease legislation. This year Jordan’s Guardian Angels was represented by Sibling Support Coordinator, Lexi Levine and Director of Advocacy and Engagement, Brittany Cardoza. Here’s Brittany’s recap of the events:

Rare disease week on Capitol Hill has always been one of my most favorite gatherings, second only to seeing everyone at family conference! This year I was thrilled to attend with another JGA team member, allowing us to bounce ideas off one another and meet with twice the number of Congressional offices. Each year kicks off Monday with a day with Food and Drug Administration, followed by a day at the National Institute of Health’s campus, a day of panel discussions and breakouts led by Rare Disease Legislative Advocates, and finally a day of hill meetings.

Prior to the last week in February, Rare Disease Legislative Advocates, an arm of the EveryLife Foundation for Rare Diseases, spend weeks meeting with rare disease caucus co-chairs, and compile legislative asks that benefit the entire rare community.

This rare disease week was the first one back in person since the arrival of the Covid-19 pandemic, and the rare community showed up in a big way - over 600 advocates attended 300 meetings!

“During their Hill meetings, rare disease advocates asked their Representative and Senators to support appropriations for critical rare disease programs in FY24, cosponsor the BENEFIT Act, sign a Congressional sign on letter to FDA requesting a formation of an FDA task force, and join the Rare Disease Congressional Caucus. “- Rare Disease Legislative Advocates

Rare advocates are arranged into meetings by state and meet with Senate and House members alike. Lexi and I represented New York and California, and together were able to visit the offices of Senator Feinstein (CA), Senator Padilla (CA), Representative Matsui (CA), Representative Schiff (CA), Senator Gillibrand (NY), Senator Schumer (NY), and Representative Garbarino (NY).

If the thought of attending the rare disease week panels and advocating seems overwhelming to you, I understand. Just four years ago I attended my first rare disease week solo, having some concerns about picking up the terminology and feeling qualified to speak on behalf of our Jordan’s Syndrome community. In those moments I recall the words of our podcast host Christina Janes, “Sometimes it’s scary to try something new- do it anyway.” If after that I’m still in doubt, I think of our families, and the systemic challenges they face every day. They did not sign up to be advocates but have assumed the role since the day their child was born.

Luckily, there is a lot of support given to advocates along the way. The first two days of rare disease week serve to understand government agencies, the next day is a deep dive into every legislative ask and breakout rooms to teach you how to share your story. (Lexi was a panelist for the Young Adult Rare Representatives- watch her presentation here.) On the day of your hill meetings, Rare Disease Legislative Advocates appoint one seasoned advocate to attend each meeting, so that no one must attend on their own.

For me, the most touching and empowering part of the week is witnessing the connection between the policy advisors and the advocates. Policy advisors have numerous meetings with constituents daily, but I can’t imagine all are as important or moving as the meetings I attended. Rare disease does not discriminate between gender, culture, or political party. To bear witness to people who have nothing and yet everything in common, coming together to share their story in the name of advancing the rare community is powerful.

In one of my Senate meetings a father was educating a policy advisor on The BENEFIT Act,
(This legislation would require FDA to provide a description of how patient-experience data was considered in its risk-benefit framework. Patient experience data can include patient reported outcomes, testimonials, patient preference data, and natural history studies.)

When they locked eyes as the father said, “I used to lie awake worrying if the science would ever be advanced enough to help my son. Now, I don’t worry about the science, we know that’s there. I worry about whether a treatment will be approved in time. Please pass this sentiment along to the Senator, so I don’t have to worry about what will happen to my son when I leave this earth.”

If you think sharing your story isn’t enough to make a difference, that it won’t matter- I promise you that it does.

Are you ready to stand up and make a difference for individuals living with rare disease?  At Jordan’s Guardian Angels we coordinate an Advocacy Subcommittee, have an advocacy one sheet to share with your representatives, and connections to many rare disease warriors eager to make your voice heard. Every voice matters. I can’t wait to hear yours.
 
Contact Brittany at bcardoza@jordansguardianangels.org.

Find legislative asks and recordings of Rare Disease week here.
 

Published

March 16, 2023

Share

lotus-978659_1280

JGA Launches Holistic Wellness Series

Jordan’s Guardian Angels is excited to invite you to a 6-week Holistic Health and Wellness Workshop Series.

The workshops for Moms will tackle everything from the definition of wellness and misconceptions about the topic to several holistic health modalities meant to help you improve your everyday life.

There are only 8-10 spots per session and they will go fast… so click here to sign up now!

Holistic Health Flyer JPEG

Published

March 3, 2023

Share

#OneInAMillion - 1

JGA Launches Global #JGAOneInAMillion Campaign

Hello JGA families! Our 2023 global campaign "JGA One In A Million” is ready to launch and NOW WE NEED YOUR HELP!

We will be using the hashtag #JGAOneInAMillion. The goal is to get as many people as humanly possible to do one simple thing: donate a dollar to JGA.

It’s literally that easy to share and help!

This campaign platform will be attached to all fundraising efforts throughout the year, with all of the donations compiling toward the ultimate - lofty - goal of raising one million dollars!! SO LET'S GO!

Click the link to learn more!

 

#OneInAMillion - 1

Published

March 3, 2023

Share

Connect With Us

Contact Info

1121 L St, Suite 100, Sacramento, CA 95814

Jordan’s Guardian Angels is a public charity exempt from Federal Income Tax as an organization described in Section 501 (c)(3) of the Internal Revenue Code, EIN 90-1022228. Contributions to Jordan’s Guardian Angels are tax deductible to the fullest extent allowed by law. No goods or services were provided in consideration for the contributions except as reported above.