Rare Disease Day: February 29, 2020

We are pleased to announce $3,803.44 was raised by the ACDA and an additional £1,144.85 was raised by our sister UK registered charity, The David Ashwell Foundation, for a grand total of $5,138 in connection with Rare Disease Day on February 29, 2020. In addition to this amount, the family and friends of Caleb Carrigan also contributed an outstanding additional $9,229. Our sincerest thanks to the families, friends, colleagues and classmates of the ACDA, The David Ashwell Foundation and Caleb Carrigan 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 Elementary School (East Quogue, NY), The Suffolk County District Attorney, Financial Investigations & Money Laundering Bureau (Hauppauge, NY), Suffolk County Department of Law (Hauppauge, NY), Suffolk County Budget Office & Management Office (Hauppauge, NY), Suffolk County Department of Audit & Control (Hauppauge, NY), Suffolk County Office of the Aging (Hauppauge, NY) and Suffolk County Civil Service Department (Hauppauge, NY).

In the UK, we would like to give our very special thanks to Handcross Park School, Westons pharmacy, New Beginnings Nursery and Coomb Road School, Mary Magdalene Catholic School, Kirkby Great Broughton Church of England School & Nursery School, Appleton Whiske School, Manor House Surgery and Steel and Alloy Birmingham.

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 2020!

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 for Rare Disease Day 2020. #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 29, 2020, 8:30 p.m. EST): As #RareDiseaseDay 2020 draws to a close, we would like to give our sincerest thanks to our ACDA community for the overwhelming support, including generous donations during the past two days in honor of Caleb, James, Fallon, Alex, David, Callie, Jackson, Dean, Garrett, Chelsea, Luca, Xavier, Griffin, Barrett, Ezekiel, Felina, Amelia, Phoebe, Ronan, Johnny, Annabelle, Imogen, Ayla, Joey, Sadie and Finley. These honorary donations represent twenty-six of our precious ACDA children. It has truly been a fantastic two days of awareness and giving.

Stay tuned for updates in the coming days on the total amount raised in connection with #RareDiseaseDay 2020! 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 29, 2020, 8:00 a.m. EST): Today is (officially!) Rare Disease Day! It is recognized on the last day of February each year, the 29th in 2020! We kicked off our celebrations yesterday with a jeans’ day at workplaces and schools around the world. Please post your pictures today in the comments below of your jeans’ day, ACDA T-shirts, sweatshirts or other apparel featuring the ACDA logo! We will compile for our slideshow on our website. #RareDiseaseDay is one of our most important ACDA fundraisers for our annual research grants. We will showcase all donations made yesterday and today in tribute of a loved one with a special “Rare Disease Day 2020” recognition image featuring the child’s name. 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

Thank you for your support! #RareDiseaseDay, #ShowYourRare, #WRDD2020, #ACD, #ACDMPV


Update (February 28, 2020, 6:00 a.m. EST):  It’s here! Today and tomorrow we are coming together to recognize #RareDiseaseDay2020! In addition to spreading awareness about ACDMPV, today also marks a critical ACDA fundraiser for our annual research grants and your support matters! Last year we raised over $5,000 on this one day alone.

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! We will compile all the pictures into a slideshow for our website.

We will be showcasing donations made today and tomorrow in tribute of a loved one with a special “Rare Disease Day 2020” 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 two days 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, #WRDD2020, #ACD, #ACDMPV

The ACDA is a 501(c)(3) non-profit, tax-exempt organization as designated by the Internal Revenue Code of the United States. If you would like to help fund research into ACD, please donate here: https://acdassociation.org/donate/

If you live in the UK or elsewhere in Europe, you can also make a donation directly to our sister organization, The David Ashwell Foundation HERE.

ACDA store: https://shop.spreadshirt.com/ACDAssociation
ACDA Facebook: http://www.facebook.com/ACD.Association
ACDA Twitter: http://twitter.com/acdassociation
ACDA website: https://acdassociation.org/


Update (February 27, 2020): Our heartfelt thanks to the NYPD for coordinating and hosting a meaningful Rare Disease Day Awareness Event today at NYPD Headquarters in New York City in recognition of #RareDiseaseDay this Saturday. ACDA members, Maria Catalano and Jimmy Perrella, were special guest speakers and shared a beautiful video and speech about their son, James. The ACDA was further represented by speaker, John Rista, and audience member, Bob Rilling. The event also featured representatives from NORD, medical professionals from area hospitals, organ transplant specialists, law enforcement and other families touched by RDD. Our special thanks to the NYC Police Department for organizing this important event and the Catalano/Perrella family for inviting the ACDA. Alone we are rare, together we are strong. #RDD2020 #JeansforGenes

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Update (February 27, 2020): It’s coming!! Saturday (Feb. 29) is Rare Disease Day and one of the most important ACDA fundraisers for our annual research grants. We will be recognizing the day on Friday (Feb. 28) as well. Wear your jeans to work on Feb. 28 or 29 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 beginning tomorrow!


Update (February 22, 2020): 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 or 29 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, 2020):

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

Click HERE for ways to participate in the U.S. in 2020 and click HERE to visit the EURORDIS website for Rare Disease Day 2020 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 Friday, 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, #WRDD2020#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.

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 fifth 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 $12.99 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. 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.

Upcoming Dates

May 3, 2020 – International Bereaved Mother’s Day

International Bereaved Mother’s Day was created as part of the CarlyMarie Project to “educate society about the true meaning of Mother’s Day…it is a heart centered attempt at healing the official Mother’s Day.”

August 19, 2020 – Day of Hope

“August 19th is about coming together as a whole community to openly speak about these children and celebrating their short lives. Each year thousands of people around the globe take part in The Day Of Hope by hanging up prayer flags in honour of their babies and children that have died. Many people also share our Prayer Flag awareness images on facebook, instagram, twitter and other social networks.” From the CarlyMarie Project.

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.”

October 15, 2020 – Pregnancy and Infant Loss Remembrance Day

The October 15th Pregnancy and Infant Loss Remembrance Day campaign began in 2002 and is a day of remembrance for pregnancy loss and infant death. 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.

December 1, 2020 – Giving Tuesday

We have a day for giving thanks. We have two for getting deals. Now, we have #GivingTuesday, a global day dedicated to giving back. On Tuesday, December 1, 2020, charities, families, businesses, community centers, and students around the world will come together for one common purpose: to celebrate generosity and to give. It’s a simple idea. Just find a way for your family, your community, your company or your organization to come together to give something more. Then tell everyone you can about how you are giving. We hope you will consider giving to the ACDA on #GivingTuesday.

February 28, 2021 – Rare Disease Day

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. Anyone can be involved in Rare Disease Day and there are many suggested activities. The day has been established as a grassroots advocacy day and we encourage everyone to participate in some way. Click to see how the ACDA supported Rare Disease Day in prior years (2020, 2019, 2018, 2017, 2016)! Click HERE for ways to participate in the United States and click HERE to visit the EURORDIS website for Rare Disease Day in Europe.

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 two multiyear research grants from the NIH in 2010 and 2017. 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

ACDA Memorial Wall

In October 2019, the ACDA created a memorial wall in honor of Pregnancy and Infant Loss Awareness month. Projects in prior years have included collages of our babies, a photo project of bereaved parents, luminaries and calligraphy.

This year a memorial wall is dedicated to the memory of our children. The names commemorate children registered with the ACDA that have sadly passed away. So many names and so many stories with so much love and so much heartbreak. We encourage you to take a moment to look through the names and reflect on the lives of these precious children and the 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, 2019. #WaveofLight #ACDAWaveofLight #infantloss #PAIL

 

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!