ACD AssociationACDA Project Pocket Hugs
In October 2025, the ACDA compiled “Project Pocket Hugs: A Little Hug for Someone You Love” for Pregnancy and Infant Loss Awareness Month.
Hundreds of pocket teddy bears, each lovingly labeled and named after a child affected by ACDMPV, were given away by the ACDA at an international medical conference. These special “pocket hugs” are intended to create connections around the world and inspire joy in honor of our children. We hope it brings some comfort to imagine each bear finding a home and spreading a bit of happiness in each child’s name.
A special way to participate this month is by reflecting on the teddy bear names—scrolling below—as you light your candle during the ACDA Wave of Light on October 15.
A small sample of the hundreds of bears distributed,
each labeled with a name of every child registered with the ACDA.
Please go HERE to learn how to participate in the ACDA Wave of Light on October 15, 2025. #WaveofLight #ACDAWaveofLight
We encourage you to take a moment to view the names scrolling above and reflect on the lives of these precious children and the heartbreaking loss endured by their respective families, friends and loved ones.
Projects for October 15 in prior years have included calligraphy, luminaries, collages of our babies, photo project of bereaved parents, memorial wall, written word project about grief over time, audio compilation of spoken names, stories about the meaning behind a child’s name, interactive map and digital quilt. Many of these touching projects are available for viewing at anytime on our website, allowing you to engage with the tributes and stories shared.
October
On Tuesday, October 15 at 7:00 p.m. in your respective time zone, please share a photo of your candle on the ACDA public Facebook and/or Instagram pages to create an ACDA Wave of Light. Please also use the public forum to share your child’s name or special memory in the comments.
The ACDA Wave of Light provides a time for quiet remembrance and reflection and is a powerful worldwide experience in honor of our loved ones. We hope all of our ACDA families and friends around the world will commemorate this special day by participating in the ACDA Wave of Light event. #WaveofLight #ACDAWaveofLight
In October 1988, October was established as National Pregnancy and Infant Loss Awareness Month. “When a child loses his parent, they are called an orphan. When a spouse loses her or his partner, they are called a widow or widower. When parents lose their child, there isn’t a word to describe them. This month recognizes the loss so many parents experience across the United States and around the world.”
In addition, October 15 is Pregnancy and Infant Loss Remembrance Day. The day is observed with ceremonies and candle-lighting vigils, concluding with the International Wave of Light; a worldwide lighting of candles. The International Wave of Light invites participants from around the world to light a candle at 7:00 p.m. on October 15 in their respective time zones, and to leave the candle burning for at least an hour. The result is a continuous chain of light spanning the globe for a 24 hour period in honor and remembrance of our babies we have lost.
The ACDA sends love and light to all of our ACD affected families and friends this month. Searching for answers…hoping for a cure.
Rare Disease Day: February 28, 2025
Update (March 4, 2025): Now that #RareDiseaseDay 2025 has drawn to a close, we would like to give our sincerest thanks to our ACDA community for the support, including generous donations in honor of Fallon, Johnny, EZ Matthew and Barrett. These honorary donations represent four of our precious ACDA children. Please also let us know if you raised money in honor of a child not listed as we know there were numerous fundraisers (with some donations marked as private on the Facebook fundraisers) and we want to be sure we recognize all honorees!
We raised $2,052.22 in connection with #RareDiseaseDay 2025! The funds will be contributed to ACDMPV research grants and supporting the efforts of the medical community to find the cause of and cure for ACDMPV. We are thankful for a day of awareness and giving.
If you missed Rare Disease Day 2025 but would like to contribute to our goal of $5,000, we invite you to donate at any time – https://acdassociation.org/donate
Searching for answers…hoping for a cure.
Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year – February 28 in 2025. The ACDA has signed on once again to support this awareness campaign and we encourage everyone to participate in some way.
Below are a few suggested ideas:
- Click HERE ($), 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 Friday, February 28 for Rare Disease Day! #JeansForGenes
- Fill your home with color! In an effort of global solidarity, you are invited to light or decorate your home with the Rare Disease Day colors at 7:00 p.m. your local time on February 28, 2025. See the flyer below for additional details!
- Help light up landmarks around the country on February 28, 2025! Identify potential landmarks—buildings, bridges, homes, businesses, stadiums, and other local points of interest—and complete any applications or request forms, as required by the landmark you are asking to light up. Read further details here!
- Organize a fundraiser (Facebook or direct give) 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.
- Join the ACDA on social media by using the official ACDA frame above (you can download the transparent .PNG file HERE and overlay onto your favorite photo in your preferred photo app if you are tech savvy – or try overlaying your photos with a free online version at https://overlay.imageonline.co – you also may need to do it on a computer rather than mobile and crop after) to share that you love someone rare! Also use the hashtags #LightUpForRare #RareDiseaseDay, #ShowYourRare, #WRDD2025, #ACD, #ACDMPV
Click to see how the ACDA supported Rare Disease Day in 2024 (also for extra fun, check out our archives for 2023, 2022, 2021, 2020, 2019, 2018, 2017 and 2016)! Click HERE for ways to participate in the U.S. in 2025 and click HERE to visit the EURORDIS website for Rare Disease Day 2024 in Europe.
Give Back While You Holiday Shop
With the holiday season fast approaching, the ACDA has prepared a list of ways to enjoy the wonderful tradition of gift giving with an extra bonus of helping our nonprofit raise funds for ACDMPV research.
1. Spreadshirt
Our online store through Spreadshirt ships internationally and includes items for sale featuring the ACDA logo with a designated portion of the sale supporting the ACDA. T-shirts are just the beginning of the products offered…check out our store to see hoodies, baby clothes, buttons, mugs, drinkware, phone cases, tote bags, doggie bandanas, ornaments, etc. The ACDA earns a commission equal to 20% of every product sold!
2. Purchase coffee or tea through Giving Bean:
Giving Bean is a gourmet coffee roaster providing a variety of freshly roasted whole bean and ground coffees, fine tea, gourmet cocoa, chai, and biscotti to the continental U.S.
- The ACDA earns 25% of almost every item sold.
- All coffee is roasted-to-order (whole bean or ground) and arrives fresh, assuring its great taste.
- Prices are $16-17 for a standard bag of coffee and tea, comparable to other high quality coffees and teas, with lots of flavors including Sunrise Breakfast Blend (medium roast), Bold Reserve, French Vanilla, Caramel Creme, Chocolate Raspberry, Cinnamon Hazelnut, Pumpkin Spice, Organic Heritage Blend, etc.
Please click HERE to go directly to the ACDA supporter page and 25% of any purchases made through such link will go to the ACDA.
3. The David Ashwell Foundation
If you live in the UK or elsewhere in Europe, there are a number of options available for funding ACDMPV research through The David Ashwell Foundation, including using the Giving Machine while you online shop. Please click HERE and scroll to the bottom to learn more.
We give thanks to all of you that have supported our mission to find the cause and cure for ACDMPV. However you celebrate the holiday season, we wish you peace and joy.
Participate in Research
How You Can Help Research into ACDMPV
A previous proposal submitted to the National Institutes of Health (NIH) in the USA by Baylor College of Medicine in Houston, Texas, USA for ACDMPV research was not funded primarily because the NIH felt there was an insufficient amount of genetic material available at that time for research. In order to enhance the chances for successful research grants and improve the outcomes of current and future studies, the ACDA encourages families to submit DNA and tissue samples to the ACDMPV research team based at Baylor. Every sample may be critical to advance our knowledge of the disease as one individual sample can provide unique insights in furtherance of ACDMPV research. Thankfully, Baylor subsequently received three multiyear research grants from the NIH in 2010, 2017 and 2023. Baylor has also received several annual seed grants from NORD for ACDMPV research. Please contact Dr. Pawel Stankiewicz at Baylor to participate in the study. Read More
NIH Grant Announcement
It is the great pleasure of the ACDA to announce Baylor College of Medicine in Houston, Texas, USA was recently awarded a NIH R01 grant in August 2023 in excess of $3.1 million for ACDMPV research over the course of four years ($793,392 per year). This multi-year study at Baylor hopes to identify new genetic variants, allowing for more precise diagnosis and prognosis of Lethal lung developmental disorders (LLDDs), facilitating more informative genetic counseling, and providing targets for development of potential in utero treatments for LLDDs and pulmonary arterial hypertension (PAH). It is Baylor’s hope their data will also help to better understand incomplete penetrance and variable expressivity phenomena in human genetics in general. The 2023 NIH grant award follows a 2017 NIH grant for $1,952,000 that explored how enhancers in chromosome 16q24.1, including long noncoding RNAs (lncRNAs), regulated expression of the FOXF1 gene responsible for ACDMPV.
The ACDA extends our heartfelt thanks to Dr. Pawel Stankiewicz (Project Leader for both the 2017 and the 2023 NIH grants) and Dr. Przemyslaw Szafranski at Baylor College of Medicine for their tireless efforts to secure substantial NIH funding. As background, R01 grants from the NIH are highly competitive and are known as the gold standard due to it being one of the most respected mechanisms of financial support in the medical research world.
Please join us in publicizing this tremendous and significant news by sharing this announcement. We look forward to providing updates on the results of the research through this NIH grant as we continue our steadfast mission to find the cause of and cure for ACDMPV.
None of this would be possible without the ongoing seed grants raised by families and friends affected by ACDMPV. Among other objectives, prior seed grants have helped Baylor accumulate and maintain the largest collection of DNA and tissue samples related to ACDMPV in the world and to detect mutations and deletions therein. The smaller seed grants (approx $50,000) issued in recent years through money raised by ACDMPV affected families and friends has helped to collect data for use in the 2017 and 2023 larger multi-year government grants, which was the exact purpose of those seed grants. We will continue to focus on annual seed grants to investigate ACDMPV from all perspectives, including genetic, biological, clinical, pathology, etc. Our thanks, always, to the numerous individuals and organizations who continue to support our very important mission from the ground up.
NIH 2023 Project Information
Title: Etiology and pathogenesis of lethal lung developmental disorders in neonates
Project Leader: Pawel Stankiewicz, MD, PhD
Awardee Organization: Baylor College of Medicine
Total Funding: $3.1 million+ ($793,392 per year)
Project Start Date: August 15, 2023
Project End Date: June 1, 2027
Project Number: 1R01HL165301-01A1
Public Health Relevance Statement: PROJECT NARRATIVE – The main focus of our research is studying the role of SHH-FOXF1 and TBX4-FGF10 signaling pathways in epithelial-mesenchyme interactions during human lung development as well as in etiology of lethal lung developmental disorders (LLDD) and pulmonary arterial hypertension (PAH) in neonates. In particular, we are interested in an interplay between the pathogenic coding variants and the regulatory non-coding regulatory elements of the FOXF1, FENDRR, TBX4, and FGF10 genes, implied in complex compound inheritance of these disorders. We hypothesize that (i) non-coding variants are promising therapeutic target and (ii) that a little known transmembrane protein TMEM100 mediates SHH-FOXF1 and TBX4-FGF10 signaling during human lung development.
ACDA Digital Quilt Project
In October 2024, the ACDA created a digital quilt project for Pregnancy and Infant Loss Awareness Month, with each square representing a child affected by ACDMPV. Please explore each individual digital square in detail below.
This unique and collaborative effort invited families to create a digital square that represents their child affected by ACDMPV. The ACDA assembled each personalized square into a larger “digital quilt”. This combined quilt not only allows families to share their special memories but also to connect with and honor the collective experiences of other families affected by ACDMPV. Thank you for participating and creating a beautiful tapestry of remembrance together. A suggested idea is to view the individual quilt squares while lighting your candle on October 15 during the ACDA Wave of Light.
Please go HERE to learn how to participate in the ACDA Wave of Light on October 15, 2024. #WaveofLight #ACDAWaveofLight
We encourage you to take a moment to view the gallery above and reflect on the lives of these precious children and the heartbreaking loss endured by their respective families, friends and loved ones.
Projects for October 15 in prior years have included calligraphy, luminaries, collages of our babies, photo project of bereaved parents, memorial wall, written word project about grief over time, audio compilation of spoken names, stories about the meaning behind a child’s name and an interactive map. Many of these touching projects are available for viewing at anytime on our website, allowing you to engage with the tributes and stories shared.
Rare Disease Day: February 29, 2024
Update (March 1, 2024): Now that #RareDiseaseDay 2024 has drawn to a close, we would like to give our sincerest thanks to our ACDA community for the support, including generous donations yesterday in honor of Halle, Natalie Jo, Casey S., Colbie, Fallon, Barrett, Callie, David, Baby James, Merrideth, Dean, Annabelle, Johnny, Zachary W, Amelia, Poppy, Phoebe B. and Ronan B. These honorary donations represent eighteen of our precious ACDA children. We are thankful for a day of awareness and giving.
Stay tuned for updates in the coming days on the total amount raised in connection with #RareDiseaseDay 2024! The funds will be contributed to ACDMPV research grants and supporting the efforts of the medical community to find the cause of and cure for ACDMPV.
If you would still like to contribute, please visit our website at any time – https://acdassociation.org/donate/
Searching for answers…hoping for a cure.
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 29 in 2024. The ACDA has signed on once again to support this awareness campaign and we encourage everyone to participate in some way.
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 29 for Rare Disease Day! #JeansForGenes
- Fill your home with color! In an effort of global solidarity, you are invited to light or decorate your home with the Rare Disease Day colors at 7:00 p.m. your local time on February 29, 2024. See the flyer below for additional details!
- Help light up landmarks around the country on February 29, 2024! Identify potential landmarks—buildings, bridges, homes, businesses, stadiums, and other local points of interest—and complete any applications or request forms, as required by the landmark you are asking to light up. Read further details here!
- Organize a fundraiser (Facebook or direct give) 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.
- Join the ACDA on social media by using the official ACDA frame above (you can download the transparent .PNG file HERE and overlay onto your favorite photo in your preferred photo app if you are tech savvy – or try overlaying your photos with a free online version at https://overlay.imageonline.co – you also may need to do it on a computer rather than mobile and crop after) to share that you love someone rare! Also use the hashtags #LightUpForRare #RareDiseaseDay, #ShowYourRare, #WRDD2024, #ACD, #ACDMPV
Click to see how the ACDA supported Rare Disease Day in 2023 (also for extra fun, 2022, 2021, 2020, 2019, 2018, 2017 and 2016)! Click HERE for ways to participate in the U.S. in 2024 and click HERE to visit the EURORDIS website for Rare Disease Day 2024 in Europe.
ACDA Map Project
In October 2023, the ACDA created an interactive map project for Pregnancy and Infant Loss Awareness Month. Each candle on the interactive map represents a child affected by ACDMPV in our ACDA registered families.
Maps provide perspective and context regarding the tragic impacts of ACDMPV on a global scale. We hope the narrative demonstrated by this map will provide a sense of community within our ACDA families. A suggested idea is to view the individual map details while lighting your candle on October 15 during the ACDA Wave of Light.
We encourage you to take a moment to click on the interactive map and reflect on the lives of these precious children and the heartbreaking loss endured by their respective families, friends and loved ones.
Please go HERE to learn how to participate in the ACDA Wave of Light on October 15, 2023. #WaveofLight #ACDAWaveofLight
Projects for October 15 in prior years have included collages of our babies, photo project of bereaved parents, memorial wall, luminaries, calligraphy, written word project about grief over time, audio compilation of spoken names and a story-telling project about the meaning behind the names of children affected by ACDMPV. Many of the past projects can be viewed at any time on our website.
Rare Disease Day: February 28, 2023
Update (March 1, 2023): Now that #RareDiseaseDay2023 has drawn to a close, we would like to give our sincerest thanks to our ACDA community for the support, including generous donations yesterday in honor of Fallon, Amelia, Ronan B., Phoebe, Barrett, Annabelle, Dean, Chelsea and Baby James. These honorary donations represent nine of our precious ACDA children. We are thankful for a day of awareness and giving.
Stay tuned for updates in the coming days on the total amount raised in connection with #RareDiseaseDay 2023! 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 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, 2023, 6:00 a.m. EST): It’s here! Today we are coming together to recognize #RareDiseaseDay2023! In addition to spreading awareness about ACDMPV, today also marks a critical ACDA fundraiser for our annual research grants and your support matters!
Today is also 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! Please also share your light show for NORD’s #LightUpForRare! We will compile all the pictures into a slideshow for our website.
We will be showcasing donations made today in tribute of a loved one with a special “Rare Disease Day 2023” 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. Please go here to make your donation today: https://acdassociation.org/donate
If you donate through the Facebook button, please be sure to let us know in the comments below or through an email to treasurer@acdassociation.org as we do not receive a list of individual donors through Facebook. We want to be sure to recognize your honorary donation!
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, #LightUpForRare, #WRDD23, #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 Instagram: https://www.instagram.com/alveolar_capillary_dysplasia/
ACDA Twitter: http://twitter.com/acdassociation
ACDA website: https://acdassociation.org/
Update (February 27, 2023): It’s coming!! Tuesday (February 28) is Rare Disease Day and one of the most important ACDA fundraisers for our annual research grants. Wear your jeans to work on Feb. 28 and/or your ACDA T-shirts, sweatshirts or other apparel featuring the ACDA logo. Also consider joining NORD’s #LightUpForRareCampaign (details below!). Please send us a picture for the slideshow on our website beginning tomorrow!
Update (February 21, 2023): 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 $5 “Wear Jeans to Work” day on February 28 and information about NORD’s #LightUpForRare! It’s not too late for the ACDA to create a special “Wear Jeans to Work” day flyer personalized with your child’s name if you would like to organize the event at your workplace. Please send a message, leave a comment or email (president@acdassociation.org) if you would like to request a customized flyer for distribution. Rare Disease Day is one of the ACDA’s biggest fundraisers during the year and we need your help to continue funding annual ACD research grants! THANK YOU!
Original Post (February 1, 2023):
Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year – February 28 in 2023. The ACDA has signed on once again to support this awareness campaign and we encourage everyone to participate in some way.
Below are a few suggested ideas:
- Click HERE ($), 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 Tuesday, February 28 for Rare Disease Day! #JeansForGenes
- Fill your home with color! In an effort of global solidarity, you are invited to light or decorate your home with the Rare Disease Day colors at 7:00 p.m. your local time on February 28, 2023. See the flyer below for additional details!
- Organize a fundraiser (Facebook or direct give) 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.
- Join the ACDA on social media by using the official ACDA frame above (you can download the transparent .PNG file HERE and overlay onto your favorite photo in your preferred photo app if you are tech savvy – or try overlaying your photos with a free online version at https://overlay.imageonline.co – you also may need to do it on a computer rather than mobile and crop after) to share that you love someone rare! Also use the hashtags #LightUpForRare #RareDiseaseDay, #ShowYourRare, #WRDD2023, #ACD, #ACDMPV
Click to see how the ACDA supported Rare Disease Day in 2022 (also 2021, 2020, 2019, 2018, 2017 and 2016)! Click HERE for ways to participate in the U.S. in 2023 and click HERE to visit the EURORDIS website for Rare Disease Day 2023 in Europe.
ACD Association 