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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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 Monday, 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.

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)!

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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 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.

Upcoming Dates

October – Pregnancy and Infant Loss Awareness Month

In October 1988, President Ronald Reagan 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.”
Read More

Participate in Research

How You Can Help Research into ACDMPV
A previous proposal by the Baylor College of Medicine submitted to The National Institutes of Health (NIH) for on-going ACDMPV research was not funded primarily because NIH felt there was an insufficient amount of genetic material available for research. In order to enhance the chances for successful research grants and improve the outcomes of the studies in the future, we encourage families to donate their baby’s tissue and blood samples to the ACDMPV research team based at Baylor. Every sample is critical because we have such a small number of samples. Please contact Dr. Pawel Stankiewicz at Baylor to participate in the study. Read More

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.

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. Amazon Smile – At smile.amazon.com, you have the exact same prices, selection and convenient shopping experience as Amazon.com, with the added benefit that Amazon will automatically donate 0.5% of the purchase price to the ACDA at no additional cost to you. To set up your Amazon Smile account, go to smile.amazon.com, log in with your Amazon password or create an account, go to “Your Account”, select “Alveolar Capillary Dysplasia Association” as your charitable organization and shop!

2. 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.

3. Giving Bean – The ACDA is running our third annual 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 $12 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. 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!

4. Bravelets™ – Bravelets™ sells bracelets for profit in the U.S. with a mission to encourage people to be brave during hard times. 10% of each item purchased through this LINK will be donated to the ACDA.

5. PayPal Giving Fund 1% Donation Match Campaign – When you donate through PayPal Giving Fund during the holidays, PayPal will add 1%. That means that 101% of your donation goes to the ACDA.  Make a donation using PayPal starting on November 28, 2017 through December 31, 2017 and they’ll match 1% of every donation of $10 USD or more that you make through the PayPal Giving Fund. Please click HERE to make a donation.

6. 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.