October

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.

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. 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 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. #WaveofLight #ACDAWaveofLight

The ACDA sends love and light to all of our ACD affected families and friends this month. Searching for answers…hoping for a cure.

ACDA Wristbands – New!

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!

A look back at 2018:

  • Fourteen new families registered with the ACDA*. These families are from the USA, France, Australia, Germany, Belgium, Sweden and Brazil.
  • One lung transplant in Germany.
  • One NORD research grant in the amount of $50,000.
  • Fifteen rainbow babies born to ACDA registered families.
  • One participant in the British Transplant Games 2018.
  • Two additional tattoos of the ACDA logo.
  • More than ten journal articles published about ACD.
  • Numerous successful fundraisers for ACD research and awareness events.
  • One continued goal – To find the cause of and cure for ACD.

*This results in 244 confirmed or suspected ACD cases in 233 families registered with the ACDA as of December 2018. Please note this data is only with respect to families that have registered with the ACDA and DOES NOT include all reported or known cases of ACD. In addition, the known case reports almost certainly underestimates the true prevalence of ACD.

Rare Disease Day: February 28, 2019

Rare Disease Day Thank You RDD Logo for newsletter (2019) copy

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)!

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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.

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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!

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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.

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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:
https://uk.virginmoneygiving.com/…/finalCharityHomepage.act…

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 (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, 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.

ACDA Photo Project

Made using TurboCollage from www.TurboCollage.com

In October 2018, the ACDA organized a photo project in honor of Pregnancy and Infant Loss Awareness month. Projects in prior years have included collages of our babies, luminaries and calligraphy. This year we are focusing on bereaved parents. Each photo portrays an ACDA parent living with heartbreak. The pink hearts represent the loss of a baby daughter and the blue hearts signify the loss of a baby son. The yellow hearts symbolize pregnancy loss through miscarriage. We encourage you to take a moment to look through the photos and reflect on the loss endured by each of these parents and their respective families, friends and loved ones.

For those who understand, no explanation is needed; for those who do not understand, no explanation is possible.” The purpose of this photo project is to show what grief looks like on so many different faces and to see a wall of strength of bereaved parents honoring and remembering their babies, together. When you provide unconditional support to any of these parents, you are shining a light for us all.  #WaveofLight #ACDAWaveofLight #infantloss #PAIL

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Rare Disease Day: February 28, 2018

Update on Rare Disease Day 2018:

We are pleased to announce $4,219.32 was raised by the ACDA and an additional £1,026 was raised by our sister UK registered charity, The David Ashwell Foundation, for a grand total of $5,631 in connection with Rare Disease Day on February 28, 2018!!  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 ACD research!

In the U.S., we would like to give our very special thanks to Lee County Bank (Fort Madison, IA), Family Design Resources (Harrisburg, PA), Discover Little Miracles (St. Michael, MN), East Quogue Teachers Association (East Quogue, NY), East Quogue Elementary School, (East Quogue, NY), The Suffolk County District Attorney, Economic Crime & Cyber Crimes Bureau (Hauppauge, NY), Suffolk County Department of Law & Suffolk County Office of Risk Management (Hauppauge, NY), Suffolk County Office for the Aging (Hauppauge, NY), Suffolk County Budget Office & Suffolk County Federal & State Aid Unit (Hauppauge, NY) and Suffolk County Department of Audit & Control & Suffolk County Office of Administration (Hauppauge, NY).

In the UK, we would like to give our very special thanks to Teesside University, Human Nutrition Research Centre, Newcastle University, Appleton Wiske School, Kirby Great Broughton school, Lewes priory school, 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.

Please see below for ways that our ACDA families and friends supported Rare Disease Day in 2018!

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)!

This slideshow requires JavaScript.

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 Wednesday, February 28 for Rare Disease Day. #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!


Update (February 28, 2018, 11:59 p.m. EST):  As #RareDiseaseDay 2018 draws to a close, we would like to give our sincere thanks to our ACDA community, including generous donations made this evening in honor of Hannah, Amelia Lee, Dawson and Chelsea. It has truly been a fantastic day of awareness and giving.

Stay tuned for updates in the coming days on the total amount raised in connection with #RareDiseaseDay 2018! The funds will be contributed to ACD research grants and supports the efforts of the medical community to find the cause of and cure for ACD. If you missed today but would 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, 2018, 7:00 p.m. EST): 
Thank you for the additional generous donations in honor of Dean, Joseph, Myla, David, Phoebe, Ronan, Imogen, Avery and Fraser! 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 ACD in honor of a loved one. Look for another follow-up post recognizing tribute donations received this evening! Thank you for your continued support on #RareDiseaseDay 2018!



Update (February 28, 2018, 2:00 p.m. EST):
Thank you for the generous donations so far today in honor of Callie, Valerie, Fallon, Annabelle, Sadie and Johnny! #RareDiseaseDay is our final push towards funding a 2018 grant for ACD research, to be awarded and announced later this year. Please help us cross the finish line! Look for additional follow-up posts recognizing tribute donations made throughout the day. As always, thank you for your support!



Update (February 28, 2018, 12:01 a.m. EST)
: It’s here! Today, February 28, is Rare Disease Day! In addition to spreading awareness about ACD, today also marks one of the ACDA’s biggest fundraising days of the year 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 card 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.

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 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, #WRDD2018, #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: https://uk.virginmoneygiving.com/…/finalCharityHomepage.act…

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/

Rare Disease Day Donate for FB (2018) 1200 x 628


Update (February 21, 2018): 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 us 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 3, 2018):

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 2018. 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 2017 and 2016!

Click HERE for ways to participate in the U.S. in 2018 and click HERE to visit the EURORDIS website for Rare Disease Day 2018 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 Wednesday, 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, #WRDD2018#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.

Families in the News

Families affected by ACDMPV have shared their stories and raised awareness through various news outlets as listed below:


Parents of baby who died of rare condition launch campaign to help others
September 3, 2021 – NZ Herald


As Pregnancy and Infant Loss Awareness Month comes to an end, local families left coping with tragedy year-round
October 26, 2020 – KMOV4


St. Charles Co. mom lost her infant and is now on a mission to help other moms and newborns
August 9, 2019 – KMOV4


Ellie Scott: A Gifted Life
June 24, 2019 – The Pulse, Patient Stories


A special showing: Bordentown City opens model train show for boy who defied the odds
December 22, 2018 – Burlington County Times


Dean’s Story: A Happy Baby through the Most Difficult of Times
December 14, 2018 – Media Milwaukee


Two families will benefit from DEC Hands event
November 3, 2017 – Fort Madison Daily Democrat


Baby Lily passes away Friday
October 28, 2017 – Medicine Hat News


Time to let her have some peace
October 27, 2017 – Medicine Hat News


Team Luca 5K Run/Walk to raise money for Ewing child battling deadly disease
October 20, 2017 – Community News


Infant lung transplant recipient battles against a deadly disease
April 28, 2017 – Mercerspace


Luca Palmisano, the nine-month-old in Ewing who defied death
April 9, 2017 – The Trentonian


Rare Disease Day: A Traverse City Family Shares Their Story of Loss
February 28, 2017 – 9&10 News


Remembering Braylee: Family draws attention to rare diseases, support
February 26, 2017 – The Daily Times


Wells Fargo’s Duke Energy Center in Charlotte, NC, USA lit in the colors of the ACDA logo
February 20, 2017


Meet Imogen – Britain’s youngest double lung transplant patient at five-months-old
October 2016 – multiple outlets


Florissant Girl Beats All Odds of Survival; Throws Out First Pitch at Busch Stadium
August 11, 2016 – The Independent News


Couple raises awareness of rare diseases
February 26, 2016 – Lee’s Summit Journal


Family hopes to raise awareness of rare disease
February 24, 2016 – The Leader-Vindicator


Proclamation issued in the State of North Carolina declaring Alveolar Capillary Dysplasia (ACD) Awareness Day
February 20, 2016 – North Carolina Office of the Governor


Paying it forward: Family of double lung transplant recipient ready to give back through new foundation
January 26, 2016 – Lake News Online


Fletcher honoured in Cairns Walk to Remember
September 29, 2015 – The Cairns Post


Spegne la macchina che tiene in vita il figlio neonato: l’addio commuove il web
September 16, 2015 – Today Italy


WATCH: Hartlepool mum tells of final moments with baby Seb
July 23, 2015 – Hartlepool Mail


Heart-rending moment mum kissed her baby goodbye as he died captured on camera
July 23, 2015 – The Mirror


Mother’s Day: Celebrating Amazing Moms in the Rare Disease Community
May 1, 2015 – NORD Blog


Local 12-year-old with double lung transplant meets golfer Erik Compton
April 17, 2015 – News12 WRDW-TV Augusta, GA


Stokesley dad to remember baby son four years on with marathon fundraiser
April 8, 2015 – Gazette Live


Father who lost baby son to rare disorder prepares for fundraising marathon
March 31, 2015 – Darlington & Stockton Times


Mum does half marathon on Mother’s Day in memory of her baby
March 16, 2015 – Northampton Chronicle & Echo


County Executive Steve Bellone Declares October 10th Alveolar Capillary Dysplasia Awareness Day
October 10, 2014 – Suffolk County Government
PDF version here


Taking Action for ACD
October 7, 2014 – NORD Blog


Comfort and love: mom launches Hearts for Hannah crochet group
June 18, 2014 – VictoriaNews


Huntersville mother wants attention for Rare Disease Day, Feb. 28
February 24, 2014 – The Charlotte Observer


Honouring Hannah
January 16, 2014 – VictoriaNews


Apple Holler celebrates great crop, shares with family in need
November 6, 2013 – Fox6 Now


ACD Interview with Gordon Griffin
March 12, 2013 – The Word 100.7 FM radio


Hope’s Rising For Jordan
November 19, 2012 – News Chanel 6 WJBF


New Medical Approach Helps Baby With Rare Disease
July 18, 2012 – St. Louis Children’s Hospital feature


Stokesley couple’s fundraising after baby tragedy
April 7, 2012 – Gazette Live


Grief and joy for one mum on Mother’s Day
March 4, 2012 – ChronicleLive


Rare Disease Day: February 28, 2017

Update on Rare Disease Day 2017:

We are pleased to announce $2,900 was raised by the ACDA and an additional £1,741 was raised by our sister UK registered charity, The David Ashwell Foundation, for a grand total of $5,016 in connection with Rare Disease Day on February 28, 2017!! 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 ACD research!

In the U.S., we would like to give our very special thanks to Moore & Van Allen PLLC (Charlotte, NC), Family Design Resources (Harrisburg, PA), Little Treasures Learning Center (Grove City, PA), The Smithtown Library (Nesconset, NY), East Quogue Union Free School District (East Quogue, NY), Suffolk County District Attorney, Economic Crime Bureau (Hauppauge, NY), Suffolk County Attorney’s Office (Hauppauge, NY), Suffolk County Office for the Aging (Hauppauge, NY) and Children’s Choice Childcare, Inc. (Hauppauge, NY).

In the UK, we would like to give our very special thanks to Brighton & Hove Albion FC, Moulscoomb primary school, Lewes priory school, Durham University (various schools & central services), Newcastle University Institute of Health & Society, Skerne Medical group, Runway East, Kirby Great Broughton school, Yarm primary and Unforgettable™.

We would also like to thank all of our individual donors and anyone who wore #JeansForGenes or sent pictures wearing the ACDA logo! Thank you for your outstanding support of our ACDA families.

Please see below for ways that our ACDA families and friends supported Rare Disease Day in 2017!

Check out our ACDA families and friends wearing #JeansforGenes and the ACDA logo (note, you can use coupon code “STPADDY17” for 15% off your entire order March 3 – March 8, 2017 in the ACDA store)!

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Please read the following two articles published recently about two of our ACDA families in connection with Rare Disease Day 2017:

Below are flyers for anyone to use at their workplace that encourages employees to donate $5 / £5 to the ACDA and wear jeans to work on February 28 as part of Rare Disease Day. Several of our ACDA families asked their workplaces and schools to join this effort to raise awareness of ACDMPV!

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!


A letter to our followers on Rare Disease Day 2017:

What does it mean to be rare? In the case of ACDMPV, it means you are one of only a few hundred children worldwide formally diagnosed with ACDMPV since first identified in 1948. By contrast, the U.S. National Institutes of Health (NIH) considers a disease rare if it has a prevalence of fewer than 200,000 affected individuals in the United States. Taking a moment to reflect on those numbers, you realize how rare ACDMPV is even within the subset of rare diseases. And yet, this very rare disease often feels a little less rare due to the compassion, generosity and support of our ACDA families and friends.

On this Rare Disease Day 2017, we are stopping to thank our ACDA families and friends for listening, learning, sharing and always remembering our children who are no longer with us or faced uncertain futures due to this very rare disease. We thank everyone who has ever ‘Liked’ our Facebook page, wore #JeansforGenes, donated funds for ACDMPV research, dressed in a shirt with the ACDA logo, organized a fundraiser, used the designated hashtags #RareDiseaseDay #WRDD2017 or shared an ACDA link. We also thank anyone who has ever sent a hug or love on those difficult days, spoken our child’s name on an ongoing basis, held our hand through an anxious rainbow pregnancy or any of the other innumerable ways you have shown your support. Our list could go on forever in so many ways.

If there is one glimmer of light in the reason that unfortunately brought all of us together, it is that the ACDA community itself is also rare. Not just because of the statistical numbers, but because our ACDA families and friends are unusually remarkable.


Original Post:

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 2017. 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 HERE to see how the ACDA supported Rare Disease Day in 2016!

Click HERE for ways to participate in the U.S. in 2017 and click HERE to visit the EURORDIS website for Rare Disease Day 2017 in Europe.

Below are a few suggested ideas:

  • Click HERE ($) or HERE (£) to print a flyer for anyone to use at their workplace that encourages employees to donate $5 / £5 to the ACDA and wear jeans to work on Tuesday, 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 and #WRDD2017
  • 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.

A look back at 2016:

  • Twenty new families registered with the ACDA. These families are from the USA, UK, Netherlands, Germany, Philippines and Canada.
  • Two lung transplants; one in the UK and one in the USA.
  • Three confirmed prenatal diagnoses of ACD without a family history.
  • One NORD research grant in the amount of $50,000.
  • Thirteen rainbow babies born to ACDA registered families.
  • Two tattoos of the ACDA logo.
  • More than ten journal articles published about ACD.
  • Numerous successful fundraisers for ACD research and awareness events.
  • One continued goal – To find the cause of and cure for ACD.

NIH Grant Announcement

It is the great pleasure of the ACDA to announce Baylor College of Medicine in Houston, Texas, USA was awarded a NIH R01 grant in the amount of $1,952,000 for ACDMPV research over the course of four years. This multi-year study at Baylor hopes to explain how enhancers in chromosome 16q24.1, including long noncoding RNAs (lncRNAs), regulate expression of the FOXF1 gene responsible for ACDMPV. Baylor will study the role of lncRNAs in genomic imprinting of the FOXF1 locus and will also study the function of a specific lncRNA in the development of lungs and other organs. LncRNAs are considered promising therapeutic targets and Baylor believes that by manipulating their expression, we may have the potential to correct the lethal phenotype of ACDMPV in the future.

The ACDA extends our heartfelt thanks to Dr. Pawel Stankiewicz (Project Leader for the 2017 NIH grant) 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 to 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 each of the past few years through money raised by ACD families and friends have helped collect data for use in this larger multi-year government grant, 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.