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 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. We hope you will share your candle lighting pictures on the ACDA Facebook page on October 15.
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 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. 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 2017 and 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.
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 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.
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.”
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
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.
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)!
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 firstname.lastname@example.org. We look forward to hearing from you!
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.
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!
Below are a few suggested ideas:
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.
May 31, 2017 – It is the great pleasure of the ACDA to announce Baylor College of Medicine in Houston, Texas, USA was recently awarded a NIH R01 grant in 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.