We are pleased to announce $5,045 was raised by the ACDA and an additional £630.36 was raised by our sister UK registered charity, The David Ashwell Foundation, for a grand total of $5,850 in connection with Rare Disease Day on February 28, 2019!! Our sincerest thanks to the families, friends, colleagues and classmates of the ACDA and The David Ashwell Foundation for raising such an incredible amount for ACDMPV research!
In the U.S., we would like to give our very special thanks to East Quogue Teachers Association (East Quogue, NY), East Quogue Elementary School (East Quogue, NY), The Suffolk County District Attorney, Financial Investigations & Money Laundering Bureau (Hauppauge, NY), Suffolk County Department of Law & Suffolk County Office of Risk Management (Hauppauge, NY), Suffolk County Budget Office & Management Office (Hauppauge, NY) and Suffolk County Department of Audit & Control (Hauppauge, NY).
In the UK, we would like to give our very special thanks to Teesside University, Human Nutrition Research Centre, Newcastle University, Co-op Springfield, Appleton Wiske School, Kirby Great Broughton school, Westons Pharmacy Brighton, Moulscoomb primary school and Hertford infants school.
We would like to thank all of our individual donors and everyone who wore #JeansForGenes or sent pictures wearing the ACDA logo! Thank you for your outstanding support of our ACDA families.
The silicone wristband campaign was incredibly successful! Available *ONLY* on Rare Disease Day 2019, all $20 minimum donations made on February 28, 2019 received two ACDA silicone wristbands per address as a THANK YOU! Each wristband was blue with white debossed lettering featuring the ACDA logo, website address and motto, “Searching for answers…hoping for a cure.” The wristband incentive reached many new first-time donors and the number of honoree families nearly doubled from eighteen children on Rare Disease Day 2018 to thirty-five children on Rare Disease Day 2019!
Please see below for ways that our ACDA families and friends supported Rare Disease Day in 2019!
Check out our ACDA families and friends wearing #JeansforGenes and the ACDA logo (be sure to visit the ACDA store if you would like to purchase any gear)!
Below are flyers used by our ACDA families at their workplace that encouraged employees to donate $5 / £5 / €5 to the ACDA to wear jeans to work on Thursday, February 28 for Rare Disease Day. #JeansForGenes
Update (March 1, 2019): Now that #RareDiseaseDay 2019 has drawn to a close, we would like to give our sincere thanks to our ACDA community, including generous donations made last night in honor of David W., Annabelle and Amelia. It was truly a fantastic day of awareness and giving, with a record number of new donors and number of donations made in a single day.
Stay tuned for updates in the coming days on the total amount raised in connection with #RareDiseaseDay 2019! The funds will be contributed to ACDMPV research grants and supports the efforts of the medical community to find the cause of and cure for ACDMPV. If you missed yesterday but would still like to contribute, please visit our website here at any time – https://acdassociation.org/donate/
Searching for answers…hoping for a cure.
Update (February 28, 2019, 9:25 p.m. EST): Thank you for the additional generous donations in honor of Alan, Bella, Chelsea, Dawson, Dean, Ezekiel, Fraser, Garrett, Hannah, Imogen, Kaylin, Kinsley, Mateo, Myla, Phoebe, Ronan, Ruby, Sadie, Allen, Shannon, Noah and further contributions in honor of children recognized earlier in the day. The donations are flowing in and the day is not over yet if you would like to make a donation to find the cause of and cure for ACDMPV in honor of a loved one. Look for another follow-up post recognizing additional tribute donations received this evening! Thank you for your continued support on #RareDiseaseDay 2019!
Update (February 28, 2019, 2:30 p.m. EST): Thank you for the generous donations so far today in honor of Fallon, Katelyn, Ethan, Felina, Callie, Luciana, Timothy, Meghan, Finley, Bailey, Alex, Eric, Marleigh and Johnny! #RareDiseaseDay is our final push towards funding the 2019 grant for ACDMPV research, to be awarded and announced later this year. Please help us cross the finish line! Reminder –> One Day Exclusive! Available *ONLY* on Rare Disease Day, all $20 minimum donations made on February 28, 2019 will receive two ACDA silicone wristbands per address as a THANK YOU!! Please click HERE to make your donation today! Look for additional follow-up posts recognizing tribute donations made throughout the day.
Update (February 28, 2019, 12:01 a.m. EST): It’s here! Today, February 28, is Rare Disease Day! In addition to spreading awareness about ACDMPV, today also marks a big ACDA fundraiser for our annual research grants and your support matters!
We will be showcasing donations made today in tribute of a loved one with a special “Rare Disease Day” recognition image featuring the child’s name. The ACDA will also send a letter to the honoree’s family acknowledging your gift. When you give in honor or in memory of someone special, you also support our mission of finding the cause of and cure for ACD.
Reminder –> One Day Exclusive! Available *ONLY* on Rare Disease Day, the ACDA is pleased to announce that all $20 minimum donations made on February 28, 2019 will receive two ACDA silicone wristbands per address as a THANK YOU!! Each wristband is blue with white debossed lettering featuring the ACDA logo, website address and motto, “Searching for answers…hoping for a cure.” Please click HERE to make your donation today!
Today is a great day to wear your ACDA T-shirts, sweatshirts or other apparel featuring the ACDA logo. Please post a picture in the comments below! We will compile all the pictures into a slideshow for our website.
Numerous organizations and schools around the world are participating in our #JeansForGenes campaign to wear jeans to work or school with a donation. Other ways to participate include visiting our ACDA store linked below to buy ACDA apparel or simply inviting your friends and family to “Like” our Facebook page.
We look forward to a meaningful day in honor of all the babies and children gone too soon or affected by ACD. Thank you for your continued support of our very important mission! #RareDiseaseDay, #ShowYourRare, #WRDD2019, #ACD, #ACDMPV
The ACDA is a 501(c)(3) non-profit, tax-exempt organization as designated by the Internal Revenue Code of the United States. If you would like to help fund research into ACD, please donate here: https://acdassociation.org/donate/
If you live in the UK or elsewhere in Europe, you can also make a donation directly to our sister organization, The David Ashwell Foundation, here:
ACDA store: https://shop.spreadshirt.com/ACDAssociation
ACDA Facebook: http://www.facebook.com/ACD.Association
ACDA Twitter: http://twitter.com/acdassociation
ACDA website: https://acdassociation.org/
Update (February 28, 2019, 12:00 a.m. EST):
One Day Exclusive! Available *ONLY* on Rare Disease Day, the ACDA is pleased to announce that all $20 minimum donations made on February 28, 2019 will receive two ACDA silicone wristbands as a THANK YOU!! Each wristband is blue with white debossed lettering featuring the ACDA logo, website address and motto, “Searching for answers…hoping for a cure.” Please click HERE to make your donation today!
Update (February 27, 2019): It’s coming! Tomorrow (Feb. 28) is Rare Disease Day and a big ACDA fundraiser for our annual research grants. Stay tuned for exciting posts tomorrow! Also, wear your jeans to work and/or your ACDA T-shirts, sweatshirts or other apparel featuring the ACDA logo. Please send us a picture for the slideshow on our website tomorrow!
Update (February 21, 2019): Only one week until Rare Disease Day! Please visit our website to learn about different ways you can participate in Rare Disease Day for the ACDA, including flyers to print for our $5 “Wear Jeans to Work” day on February 28 and links to #ShowYourRare profile frames! It’s not too late for the ACDA to create a special “Wear Jeans to Work” day flyer personalized with your child’s name if you would like to organize the event at your workplace. Please send a message, leave a comment or email (email@example.com) if you would like to request a customized flyer for distribution. Rare Disease Day is one of the ACDA’s biggest fundraisers during the year and we need your help to continue funding annual ACD research grants! THANK YOU!
Original Post (February 1, 2019):
Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year – February 28 in 2019. The ACDA has signed on once again to partner with NORD to support this awareness campaign and we encourage everyone to participate in some way. Click to see how the ACDA supported Rare Disease Day in 2018, 2017 and 2016!
Click HERE for ways to participate in the U.S. in 2019 and click HERE to visit the EURORDIS website for Rare Disease Day 2019 in Europe.
Below are a few suggested ideas:
- Click HERE ($), HERE (£) or HERE (€) to print a flyer for anyone to use at their workplace that encourages employees to donate $5 / £5 / €5 to the ACDA and wear jeans to work on Thursday, February 28 for Rare Disease Day. #JeansForGenes
- Join a social media “rare disease day” campaign by changing your profile and cover pictures to share the importance of rare disease awareness! Click HERE to upload a photo and show how much you care about rare! Use the hashtags #RareDiseaseDay, #ShowYourRare, #WRDD2019, #ACD, #ACDMPV
- Organize a fundraiser to raise money for the next ACDMPV research grant.
- Contact your local newspaper to write an article about what Rare Disease Day means to you. Click HERE to read various articles previously written about our ACDA families.