We could really use your support.
If you’re unfamiliar with who we are, PRAI stands for Pediatric Research and Advocacy Initiative. You might recognize us from our work in North Carolina and Virginia. But after raising $150k in 90 days last year, we made a major shift towards becoming a national non-profit organization with a laser focus on patient-centered research.
Our work involves bringing parents, scientists, legislators and clinicians together to address the crisis ailing our children by funding cutting edge research and advocating for quality care.
We started this effort just 2 years ago because we felt the number of scientists studying PANS was far too scant and the current diagnostic criteria did not cover a great majority of our children. It was time to broaden the scope.
Then, this year, after speaking candidly with a few of the best university labs in the world studying neuroimmunology, we were able to share some of the things parents on your boards were reporting (lyme, biofilms, mast cell activation, teeth crowding, odd gastro symptoms, strange bacteria, virus, and fungi in the blood, environmental allergies, food intolerances, EDS, gluten sensitives, joint and muscle pain in the mothers, mold sensitivity, blood clotting disorders etc), we found that those researchers REALLY wanted to hear from our families and our voice was welcomed. When often times it feels like we’re yelling loudly at the top of our lungs and no one can hear us, we were thrilled when these top notch labs actually started following up with us with even more questions. As our leadership team Skyped with international scientists, we watched as they leaned in a bit, almost excited as if we had hit on something related to their own projects. We knew then…we were on the right track. Collaboration was key.
We don’t know if you have seen some of the posts online, but we are currently raising money with something called the PRAI for 500k Campaign. We are asking families who are able (and we’re ALL TOO AWARE that sometimes, parents are just on fire and we have to stay put to quench the flames) to commit to raising 1k for PRAI by the end of October towards our $500,000 goal–all for research efforts. You can learn more about those efforts here: HERE
Ideally, families would walk together with other PANS parents in their hometown in a park or neighborhood on October 6th or host a similar easy breezy event like a restaurant fundraiser, golf tournament, wine tasting or bingo night etc. Or just raise money and walk solo and rock on with yo’ bad selves.
We would love to share this effort with your local support group to see if anyone was interested in being one of the 500 families to commit to raising 1k for PRAI, or hosting a local event in your area. Perhaps you might consider doing it together as a local support group? (holds breathe and wishes for anything that this would catch on)
PRAI would gladly provide the following:
1) Awareness T-shirts (for all fundraisers who raise $50 or more)
2) Awareness brochures
3) Press release template
4) Sponsorship package in the case someone wanted to engage local businesses.
5) Crowdfunding platform
6) FB group to encourage fundraisers towards reaching their goal with tips, tricks and support.
So we’re reaching out to ask all the local FB admins to see if it’s something they may feel comfortable supporting or sharing with their group. No pressure! We know everyone has initiatives and charities that they feel are the best fit for them. But if this was something you’d consider sharing and someone does have interest, you can direct them to our site at www.praikids.org and just click “Register” to walk in your hometown. OR “Fundraise” to Do something fun to raise money for research or “About PRAIfor500k” to learn more about what these dollars will go to support and the history of PRAI.
Thanks so much for considering passing this along to those in your group. We will be reaching out soon to follow up. Please let us know if you have any questions we can help answer about the campaign, our organization or anything else by contacting us on FB, or email contact@praikids.org or you can reach out through the website too!
Sincerely,
The PRAI team (a bunch of PANS parents who want a cure for ALL of our babies)
