Do you have a child in your family who is somehow touched by ARDS?
ARDS Foundation introduces Kids Kare Kards. Let us know who that child is and how they are affected by ARDS–as patient, sibling to an ARDS patient, or related to an adult who has ARDS–and one of our child volunteers will send an appropriate card to the child dealing with ARDS.
The kids who will be making and sending the cards also were affected by ARDS in some way. They have an understanding of what other children are going through.
Communicating with a critically ill patient is extremely important; this is especially true when that patient is a child because a child cannot comprehend why they have become so ill and the last thing one would want them to believe is that they have done something to have made this happen to them, that they deserve to be this ill. It is crucial to communicate that they have not caused the ARDS, that it is not their fault.
In the case of an ARDS patient, at times, it is often impossible to communicate with an ARDS patient due to sedation or drug induced coma. As with adult ARDS patients, children with ARDS who are heavily sedated might be able to take in conversation, voices, music, touch, sound. Sometimes they will remember later and sometimes they will not.
Once your child is out of the coma or off of the sedating medications, speak to him or her in an age appropriate manner about the events that have happened. Since ARDS is a sudden and acute syndrome, one cannot prepare for its occurrence like other illnesses or syndromes.
You might discuss what happened before, and then discuss its aftermath and potential complications. Therefore, as with adult patients, it is important not to overwhelm your child when discussing all that has happened and what is likely to happen in the future.
Describe the syndrome using the most simple, age appropriate terms. (For instance, you can tell a child with ARDS that her lungs are completely filled and not allowing the oxygen to push through and therefore the machines are pushing the oxygen though until her lungs can heal.) If necessary, enlist the assistance of the staff at the hospital.
You can explain and reassure your child that the doctors provide these treatments so that he or she will get better; you do not need to tell you child that the doctor has said he or she has a certain percentage chance of survival.
Give your child a chance to ask questions of the doctors as well; just as you want to be heard and have questions, so does your child.
Explain to your child when you need to speak privately to the doctor outside his or her presence; your child does not want to feel as if he or she is left in the dark, but if you explain that it may be boring to him or her, that it is one of those necessary situations, that you will summarize the conversation for him or her, that perhaps your child will not be as upset.
Most children are practical and would like practical information:
They want to know:
Always remember to speak to your children in an age appropriate manner and remember that it is not always necessary to give children all of the information at once.
Even with adult ARDS patients, it is not necessary to give a patient all of the information at once. This is because it is overwhelming, for children and adults alike, and given the fact that ARDS patients, especially after they have been sedated, are on a ventilator, may be hooked up to numerous machines and might be frightened and confused due to medications; evaluate the amount of information that your child needs to know.
It is important not further overwhelm or cause more anxiety.
ARDS Foundation appreciates the time and effort Dr. David Turner and Dr.. Adrienne Randolph from Children’s Hospital, Boston, Massachusetts, contributed in creating the Children & ARDS brochure.
The ARDS Foundation invites everyone to our
Saturday August 13, 2005
Chicago Botanic Garden
1000 Lake Cook Road
Glencoe, IL 60022
Take this excellent opportunity to gather with family and friends in the beautiful surroundings of the Chicago Botanic Gardens and join others who have been likewise affected by this deadly syndrome.
Coming in from out of town?
The ARDS Foundation has secured a group rate at the Deerfield Hyatt at $69.00 a night. The Deerfield Hyatt will also provide a shuttle to and from the Botanic Gardens for those staying at the hotel.
For reservations, call the Deerfield Hyatt at 847.945.3400 and tell them that you are part of the ARDS Foundation
Proceeds to benefit ARDS support, education and research.
Republic Title Company
Allstate-Matias Insurance Agency 2545 W North Ave
Chicago, IL 60647
Once Upon a Bagel, 1888 1st St, Highland Park, IL 60035
Whole Foods Market 760 Waukegan Road, Deerfield, IL 60015
847.444.1900, 847.444.1231 fax
The McLean County Deputies Fraternal Order of Police
(In Memory of Ellen Sandage)
Silent Auction Items Click Here
Tonelli’s Restaurant, Northbrook-Two Spaghetti Dinners
$25.00 towards a purchase of $50 or more
Lakeshore Theater Lakeshore Theater
Two Adult Admissions
Forty One North
$25 Gift Card
Two $25 Gift Cards
Raymonds Hair Design,
5960 W Touhy, Niles, IL $25 Gift Card
Lou Malnati’s Pizzeria
$25 Gift Card
730 S. Buffalo Grove Rd, Buffalo Grove, IL $50 Gift Card
2727 Pfingsten Rd, Glenview, IL $35 Gift Card
Build a Bear
$10 Gift Certificate
Ben Pao Restaurant
Kamehachi 1320 Shermer Road, Northbrook,IL 60062
$50.00 Gift Card
J. Terry Ross
660 Vernon Avenue
glencoe, IL 60022 $55.00 for hair coloring
Don Roth’s Blackhawk
$25 Gift Certificate
Westfield Shopping Malls
$100 Gift Card
a Mini 5 hour web Makeover from Web Dezign Studio
$70.00 in coupons from P.F. Changs
$25.00 donation from DCF Cleaners
1803 WAUKEGAN RD GLENVIEW, IL (847) 486-8666
Gift Package from Carissima Salon in Chicago
2901 N Clark 908 W Armitage Chicago, Illinois
Late Nite Catechism
Royal George Theatre Center
A Message from ARDS Foundation President
Almost every day, I hear from people asking these question: “How come no one has heard of ARDS?” “Why does ARDS not receive the same attention as breast cancer or AIDS when it takes more lives?” “What can I do to help this cause?”
There is always something that a person with passion can do for a cause that they believe in. People can join other like minded folks, as those joined together garnish more attention than someone standing alone.
Again, the ARDS Foundation is hosting another benefit and it is our hope that those in the ARDS Community, especially those who reside in Illinois or nearby, will strongly consider attending the “March for Miracles” Benefit on Saturday, August 14, 2004, beginning at 8:00 AM.
I am certain that there are many of you who have seen on the news, stories about this walk or that, and not only notice the media attention the organizations receive, but also, the many people who are in attendance. Those who attend are dedicated, make a conscious decision and find others to join them in their passion for their cause.
It is easy to talk about your cause, but to go out and do something … this is the challenge. And this is my challenge to you. If you have been touched by ARDS, again I will say that now is the time to do something. Make the commitment. We all know that talk is often just talk, and it requires a higher level of dedication to do something.
The Foundation events are about one thing… YOU. But without the ARDS Community present at these events, it makes much less sense. Anyone can write a check, call it in, so to speak. Help our voice grow. Talk to family and friends of your passion and desire to see change in your own lifetime and perhaps they, too, will accompany you to this important event.
Are you up for this challenge?
(Registration Fee for those in the ARDS Community waived)
For more information about how to participate in this exciting upcoming event, Please use our Contact Form or call us at 312-749-7049.
All donations are tax deductible in the amount allowed by the law. The ARDS Foundation is a federal 501(c)(3) organization.
On May 22, 2004, Eileen Rubin, President of the ARDS Foundation, and Paula Blonski, Vice President of the ARDS Foundation, returned to the American Thoracic Society’s International Conference for the third time. This year’s conference was held in Orlando, Florida, where temperatures hovered at about ninety degrees during the day. But lest you be worried that Eileen and Paula were out in that heat, do not be because they were busy in the convention center from early morning until evening, when temperatures cooled down.
At the convention’s PAR Poster session on Monday morning, the ARDS Foundation displayed items, which included “Radiographic Findings in ARDS” At the Exhibition Hall, the ARDS Foundation displayed the ARDS Memory Quilt, and many folks approached to tell us not only how spectacularly meaningful it was, but also, the best way to care for such a sensational artifact.
On Monday afternoon, Eileen spoke from a patient perspective, at two separate sessions: “At the Interface and Repair: Matrix, Cellular, And Developmental Paradigms of (Re)modeling in Lung Disease” and “Surviving Intensive Care: Theory and Practice of Optimizing ICU Care for Better Long-term Recovery.” The input that she received from medical professionals after speaking was phenomenal.
As usual, the ARDS Foundation not only made our usual attempts to educate those who were unfamiliar with ARDS but also we reached out to those in all respiratory areas in the hopes to continue to bring to those in the ARDS community the most up to date and relevant information on our website and in our newsletters.
On May 19, 2002, Eileen Rubin traveled on behalf of the ARDS Foundation and represented their organization in Atlanta, Georgia.
While there, they presented the new ARDS poster at the second annual PAR Poster Session which is held in conjunction with the American Thoracic Society’s International Conference. Special thanks to Eil Lilly for her generously donation in creating the poster for us.
ARDS Foundation has a new ARDS Poster.
Shown below are a few friends who met up at the ATS conference.
Dee Storey, ARDS survivor, Eileen Rubin, ARDS survivor, Sue Talbot, and Mike Talbot, ARDS survivor.
While at the conference, Eileen was able to meet many experts in pulmonary and critical care medicine who had a keen interest in ARDS, some who accomplished the innovative techniques that allow for so many more men, women and children to survive this deadly syndrome.
While speaking to these medical professionals, their enthusiasm was obvious. And it is clear that with each advancement that they achieve, where the line between life and death is ever so slight, just one little advance can save many, many lives.
2013 American Thoracic Society International Conference
Philadelphia on Saturday, May 18, 2013 – Find out more about the conference ⇒
PAR “Meet-the-Expert” event – Saturday, May 18th 10 a.m. to 2:30 p.m.
PAR “Breathing Better with the ATS” forum – Saturday, May 18th 1 to 4 p.m.
2012 American Thoracic Society International Conference
2011 American Thoracic Society International Conference
The ARDS Foundation at the ATS Conference in Denver, Colorado
Eileen and her twin Sister Ellen participated in this years ATS Conference. The American Thoracic Society’s annual conference is held each year. Critical Care physican’s from around the world were in attendance. The ARDS Foundation once again had a booth in the Convention Center where we are able to hand out information to physicans about the foundation, and what we can offer to patients, and their families. Eileen once again spoke as a patient speaker this year’s topic was Long Term Outcomes, which was well received, as always. Next years conference will be held in San Francisco, CA.
May 13-18, 2011 Denver, Colorado
At ATS 2011 in Denver, more than 400 sessions will provide a comprehensive review of the latest information on the diagnosis and treatment of respiratory diseases, critical illnesses and sleep disorders. In addition, more than 6,000 scientific research abstracts and clinical case reports will be presented, giving attendees new perspectives on the clinical, basic science and translational discoveries that will shape the future of adult and pediatric respiratory care. Among the many topics to be covered are asthma, COPD, lung cancer, obstructive sleep apnea, pulmonary hypertension, cystic fibrosis, ARDS, and sarcoidosis. Beat the rush: Register during the first week of December for ATS 2011 and secure your choice of hotel by visiting www.thoracic.org/go/international-conference. Full ATS 2011 program information and registration for courses,seminars and workshops will be online during the third week of January. For more information, please contact the ATS International Conference Department at (212) 315-8658 or firstname.lastname@example.org.
The ATS PAR dinner was held in Toronto, May, 2009
Ted Koppel, former ABC Nightline anchor; his wife, Grace Anne Dorney Koppel, who delivered the 2008 President’s Lecture; Donna Appell, R.N., chair of ATS PAR; John W. Walsh, co-founder, president and CEO of the Alpha-1 Foundation and the 2008 recipient of the ATS Public, Service Award; Bruce C. Trapnell, M.D., M.S., 2008 recipient of ATS PAR’s William J. Martin, II Distinguished Achievement Award; Eileen Rubin, J.D., chair-elect of ATS PAR; Margaret S. Herridge, M.D., M.P.H., M.Sc., recipient of the 2008 PAR Excellence Award; and former ATS president William J. Martin, II, M.D.
ATS 2009 * San Diego
ATS 2009 International Conference
May 15-20, 2009
San Diego, California
2008 American Thoracic Society International Conference
Date: May 16 – 21, 2008
Venue: Toronto (Ontario, Canada)
**ATS 2008 was held in Toronto, ON. Eileen and Paula were joined by ARDS survivor Dee Storey, and her friend, Sue, as well as ARDS Survivor Phil Cassel, at ATS PAR’s Breathing Better session on Saturday, May 17, 2008. On Monday, May 19, Pastor Ian Robb spoke during a lung transplant session, addressing his history as a lung patient which began with ARDS, then pulmonary fibrosis, and finally as a double lung transplant patient. On Tuesday, May 20, Dee Storey spoke at the Public Advisory Roundtable’s session, of her experience as an ARDS patient who received pulmonary rehabilitation.
Photos of ATS Conference in Toronto View Photos of the ATS Conference 2008
The American Thoracic Society’s International Conference is the world’s premier educational program for clinicians and researchers in adult and pediatric pulmonary, critical care and sleep medicine. With more than 400 sessions and 800 speakers, attendees can sample a broad spectrum of topics or concentrate on critical care, sleep, allergy/immunology or other specialty related to respiratory medicine.
The Advance Program will be available in January 2008 through the ATS website at www.thoracic.org. For more information, send an e-mail to email@example.com.
**ATS 2009 will be held in San Diego, California.**
The American Thoracic Society Public Advisory Roundtable is pleased to invite you to our second annual forum.
Breathing Better with the ATS to be held on Saturday May 17, 2008 from 1 p.m. to 4 p.m. at The Sheraton Centre Toronto Hotel, Toronto, Canada, 123 Queen Street West
You’ll have an opportunity to hear from patients and experts inthe pulmonary community and networkwith them afterwards. The gathering will be held in conjunction with the ATS International Conference. Hors d’oeuvres will be provided at the meeting.
Please RSVP by email firstname.lastname@example.org at your convenience but not later than March 30th, 2008.
If you have any questions contact Karen Belgiovine (212) 3158640
ARDS Foundation has been a PAR member since 2005. ARDS Foundation President Eileen Rubin is the current PAR Representative and incoming PAR President for 2009.
The ATS Public Advisory Roundtable (ATS PAR) is a core component of the American Thoracic Society and a mutually beneficial partnership wherein organizations that represent persons affected by respiratory diseases, sleep-related conditions, or related critical illnesses collaborate with the American Thoracic Society to advance their shared educational, research, patient care, and advocacy goals. ATS PAR bridges the patient’s perspective to the Society and provides the Board of Directors with strategic guidance to keep patients and families as a central focus of all ATS