ACD Association

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

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• 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!

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• Organize a fundraiser (Facebook or direct give) to raise money for the next ACDMPV research grant.

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• 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.

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• 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

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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.

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! Please click HERE to go to the ACDA Spreadshirt store.

2. Giving Bean – The ACDA runs a continuous fundraising drive for our U.S. families through Giving Bean, which is a gourmet coffee roaster providing a variety of freshly roasted coffees, fine tea, gourmet cocoa, chai, and biscotti. All coffee is roasted-to-order (your choice of whole bean or ground) and arrives fresh. Prices are 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. A Coffee Club is also available for auto-delivery every 4, 6 or 8 weeks of a coffee of your choice. Please click HERE to go directly to the ACDA supporter page and 25% of almost all 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.

In October 2022, the ACDA created a story telling project for Pregnancy and Infant Loss Awareness Month. Projects in prior years have included collages of our babies, a photo project of bereaved parents, memorial wall, luminaries, calligraphy, written word project about grief over time and an audio compilation of spoken names.

Bereaved parents often have limited opportunities to hear or say their beloved child’s name, with even fewer chances to talk about its meaning. We wanted to learn those stories. Please watch the video above or view the individual name cards below. It is our hope that sharing the story of your loved one’s name along with reading the names and stories of other children affected by ACDMPV will provide a sense of comfort and community within our ACDA families. A suggested idea is to read the final compilation of stories while lighting your candle on October 15 during the ACDA Wave of Light. 

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We encourage you to take a moment to watch the video above or read through the individual name cards below 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, 2022. #WaveofLight #ACDAWaveofLight

On Thursday, October 15 at 7:00 p.m. in your respective time zone, please share a photo of your candle on the ACDA public Facebook page or Instagram page 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, President Ronald Reagan of the United States proclaimed October 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.

Please see below for ways that our ACDA families and friends supported Rare Disease Day in 2022!

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), along with NORD’s #LightUpForRare campaign!

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 for Rare Disease Day 2022. #JeansForGenes

Please share your successful Rare Disease campaigns and activities with the ACDA by sending your stories or pictures to president@acdassociation.org. We look forward to hearing from you!

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Update (March 1, 2022): Now that #RareDiseaseDay2022 has drawn to a close, we would like to give our sincerest thanks to our ACDA community for the overwhelming support, including generous donations yesterday in honor of Merrideth, Barrett, Chelsea, Fallon, Amelia, Halima, Caleb C., Annabelle, David A., Poppy, Johnny R., Garrett P., Baby James and Callie. These honorary donations represent fourteen of our precious ACDA children. It was truly a fantastic day of awareness and giving.

Stay tuned for updates in the coming days on the total amount raised in connection with #RareDiseaseDay 2022! 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.

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Update (February 28, 2022, 6:00 a.m. EST):  It’s here! Today we are coming together to recognize #RareDiseaseDay2022! In addition to spreading awareness about ACDMPV, today also marks a critical ACDA fundraiser for our annual research grants and your support matters!

Today and tomorrow are also great days 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 2022” 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, #WRDD22, #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/

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Update (February 27, 2022): It’s coming!! Monday (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!

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Update (February 21 2022): 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!

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Original Post (February 1, 2022):

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 2022. 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.

Below are a few suggested ideas:

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• If you are a parent of a child affected by ACDMPV, please join us for a Coffee Hour on Sunday, February 27, 2022 at 1:00 p.m. EST (6:00 GMT (UK)) to meet and interact with other ACDA registered parents. The Zoom details will be provided separately via email and in a closed group for parents.

• [Edited to add: It appears most Facebook frames are no longer permitted, please see the FB announcement. Apologies for the inconvenience]. Join the ACDA on social media by using the official ACDA Facebook profile frame above (access HERE) to share that you love someone rare! Also use the hashtags #LightUpForRare #RareDiseaseDay, #ShowYourRare, #WRDD2022, #ACD, #ACDMPV

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• 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 Monday, February 28 for Rare Disease Day! #JeansForGenes

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• 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, 2022. See the flyer below for additional details!

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• Organize a fundraiser (Facebook or direct give) to raise money for the next ACDMPV research grant.
  

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• 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.

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Click to see how the ACDA supported Rare Disease Day in 2021 (also 2020, 2019, 2018, 2017 and 2016)! Click HERE for ways to participate in the U.S. in 2022 and click HERE to visit the EURORDIS website for Rare Disease Day 2022 in Europe.

In October 2021, the ACDA created an audio project for Pregnancy and Infant Loss Awareness Month. Projects in prior years have included collages of our babies, a photo project of bereaved parents, a memorial wall, luminaries, calligraphy and a written word project about grief over time.

This year we wanted to hear your child’s name. Please listen above. The purpose of this project was to compile a seamless audio file of names recorded by our ACDA families; we know saying and hearing your child’s name spoken aloud is often a welcome expression of love. It is our hope that hearing your loved one’s name along with the names of other children affected by ACDMPV will provide a sense of comfort and community within our ACDA families. A suggested idea is to listen to the audio recording while lighting your candle on October 15 during the ACDA Wave of Light.

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We encourage you to take a moment to listen to the recording 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, 2021. #WaveofLight #ACDAWaveofLight

Please see below for ways that our ACDA families and friends supported Rare Disease Day in 2021!

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)!

Please share your successful Rare Disease campaigns and activities with the ACDA by sending your stories or pictures to president@acdassociation.org. We look forward to hearing from you!

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Update (March 1, 2021): Now that #RareDiseaseDay 2021 has drawn to a close, we would like to give our sincerest thanks to our ACDA community for the overwhelming support, including generous donations yesterday in honor of Callie, Annabelle, Fallon, Johnny, Chelsea, Zeke, Amelia and Barrett. These honorary donations represent eight of our precious ACDA children. It was truly a fantastic day of awareness and giving.

Stay tuned for updates in the coming days on the total amount raised in connection with #RareDiseaseDay 2021! 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.

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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 2021. 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 2020 (also 2019, 2018, 2017 and 2016)!

Click HERE for ways to participate in the U.S. in 2021 and click HERE to visit the EURORDIS website for Rare Disease Day 2021 in Europe.

Below are a few suggested ideas:

Facebook Profile Frame (access HERE)

• Join the ACDA on social media by using the new ACDA profile frame (access HERE) to share that you love someone rare! Also use the hashtags #RareDiseaseDay, #ShowYourRare, #WRDD2021, #ACD, #ACDMPV
  
• We are pleased to announce the NYPD in New York City, USA is hosting its annual Rare Disease Day Awareness Event on February 28, 2021 at 1:00-2:30 pm EST. Please see the Zoom information below, all are invited to attend and we would love to see you there. Here’s the details:
  
  • Maria Catalano, ACDA mother to James Perrella, has facilitated the event with the ACDA and will be a featured guest speaker. The ACDA has also prepared a brief slideshow presentation for inclusion in the program and is honored a video prepared by Dr. Pawel Stankiewicz for this event will be included to provide his world renowned expertise on the topic, “Current state and summary of developments regarding ACDMPV genetic research.” The event will also feature representatives from NORD, medical professionals from area hospitals, organ transplant specialists, law enforcement and other families touched by RDD. Bob Rilling, ACDA father to Fallon Rilling, will also be in attendance in support of the ACDA and the Perrella family.
    
  • Zoom Information:
    Date: Sunday, February 28, 2021
    Time: 1:00 PM-2:30 EST
    Join Zoom Meeting
    Meeting ID: 161 828 1868
    Passcode: WEARERARE2021

• 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.
  

In October 2020, the ACDA created a written word project for Pregnancy and Infant Loss Awareness Month. Projects in prior years have included collages of our babies, a photo project of bereaved parents, memorial wall, luminaries and calligraphy.

This year we are focusing on grief over time. The purpose of this written word project was to paint a picture of grief at different moments in time as experienced by our ACDA parents, whether it be the profound sadness of the first anniversary of loss or grappling with decades old fears in anticipation of the birth of a first grandchild. While compiling this project, we began to notice a common theme and words that were applied universally by our parents regardless of when their loss had occurred. Words like Always. Love. Child. Will. Time. Never. You can see these prominent words reflected in the word cloud generated from a compilation of the individual quotes above.

We encourage you to take a moment to read through the quotes 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, 2020. #WaveofLight #ACDAWaveofLight