Noonan Syndrome Awareness Association | Businesses

Noonan Syndrome Awareness Association

Add/Update information

Reviews

Tags

• Businesses
• Non-profit organisation

23.01.2022 STAYING STRONG AND CALM IN THE TIME OF CORONAVIRUS Staying home because you’re out of work or self isolating to protect yourself and others can be tough and we are living in an unprecedented, highly stressful time Try and make the most of your quarantine and see it as an opportunity rather than a limitation... ... Reconnect with your partner Play and be present with your kids Avoid or limit exposure to the news - the constant stream of negative COVID-19 information can create anxiety Everyday find and focus on something to be grateful for and practice gratitude Remember... this time will pass #noonanstrong

16.01.2022 BACK TO SCHOOL Don’t forget we have teaching resources available on our website https://noonansyndrome.com.au/resources/

14.01.2022 FREE EBOOK FOR CHILDREN This brilliant book about Covid-19 Coronavirus just for children is available as a FREE download. Please share so it's available to every family who needs it. https://nosycrowcoronavirus.s3-eu-west-1.amazonaws.com/Coro... The Gruffalo illustrator worked with consultant Professor Graham Medley, two head teachers and a psychologist to make sure the book got the messages right, answering questions about quarantine, how you can catch the virus and what happens if you get ill. Publishers Nosy Crow have asked for donations in lieu of payment, to go to British health workers: www.nhscharitiestogether.co.uk/ Link shared in comments

13.01.2022 MINDFULNESS FOR KIDS Coronavirus is causing a lot of stress and anxiety for us all and children are very aware of current events and how their parents are feeling during this difficult time Here are some great mindfulness activities for children courtesy of The Conversation

13.01.2022 HELP IS HERE The current COVID-19 Pandemic is an extremely stressful and worrying time. Many people have lost income, work and community support networks. Caring for someone with a Rare Disease is difficult enough without the extra pressures of school & retail closures and reduced access to respite care, friends and family. ... If you need to talk to someone please access the services below. If we can help in anyway please contact us via Messenger. We’re all in this together #noonanstrong

12.01.2022 U.S. BASED RESEARCH PARTICIPANTS NEEDED The University of Maryland School of Medicine is researching Noonan Syndrome Couplets A ‘Couplet’ is when both a parent and a child have been diagnosed with the same condition... There is an online survey and phone interview. If you would like to participate please follow the link below:

08.01.2022 COVID-19: KNOW THE SYMPTOMS Many people with Noonan Syndrome (NS) have conditions that make them more vulnerable to contracting Corona Virus (COVID-19). Examples of conditions that occur at higher frequencies in NS that increase risk are Cancer, Lupus, Hashimoto’s, Rheumatoid Arthritis, Diabetes and IgA deficiency. ... It’s important to know how COVID-19 symptoms are different to seasonal flus and colds and see a Doctor immediately if you suspect you’ve caught COVID-19. The best way to prevent infection is washing your hands thoroughly and frequently (particularly before meals), sneezing/coughing into your elbow, avoiding people who are unwell and sanitising areas of food preparation and high contact (door handles, light switches etc). If you have a condition that increases your risk it’s worth considering limiting all non-essential travel and events with large crowds. If you care for someone with Noonan Syndrome take extra care with your hygiene and organise alternative care arrangements if you suspect you are ill. Let’s work together to protect the particularly vulnerable in our NS community (and community at large)

07.01.2022 INTERNATIONAL WOMENS DAY Dr Amy Roberts Dr. Roberts grew up in Massachusetts, was an undergraduate at Swarthmore College, and then attended Dartmouth Medical School. She completed her first residency in pediatrics at the University of Massachusetts and then a second residency in medical genetics at Boston Children's Hospital. During residency she began a research study to examine genotype phenotype correlations in Noonan syndrome that led to a now career-long interest in re...searching and providing clinical care for children with Noonan syndrome and related diagnoses. She was active in The Noonan Syndrome Support Group Medical Advisory Board and is now similarly involved with the Noonan Syndrome Foundation and the RASopathies Network. Currently she is a Cardiovascular Geneticist in the Department of Cardiology at Boston Children's Hospital and Associate Professor of Medicine. See more

06.01.2022 COVIDSafe App The NSAA recommends our Australian followers to download the COVIDSafe App. The COVIDSafe App allows authorities to quickly notify people if they’ve been in contact with someone with Coronavirus.... This will help speed up responses to outbreaks and help protect individuals and their families. Prompt notification of a possible infection contact is particularly important in families with an immunocompromised person (which is a common issue in Noonan Syndrome). It is completely voluntary. You can register under a pseudonym. It won't be coded to collect location information as it functions simply like a proximity detector. When you register with the app, it will collect a name, your mobile phone number, age range and post code. It will also generate an encrypted code unique to you. When you're close to someone else with the app, their app will record your encrypted reference code, as well as the date and time, your proximity and the duration of contact. The information shared by the app will be stored on phones for 21 days and deleted after 22 days. The data is encrypted and stored domestically and can’t be accessed by any other State of National officials. Unauthorised access of the data is punishable by jail. You can find answers to any other questions you may have here: https://www.health.gov.au//covidsafe-app-faqs-coronavirus-

05.01.2022 HAPPY FATHERS DAY To all the Dads in the Noonan Syndrome community supporting your families and loved ones on their NS journey we salute you and thank you for your love and care

02.01.2022 IN MEMORIAM - Dr Jacqueline Noonan Dr Noonan departed this life on Thursday 23rd July 2020. Our thoughts are with her family during this difficult time... Today we reflect upon the wonderful life of Dr. Jacqueline Noonan ... Jacqueline was born on October 28, 1928 in Burlington, Vermont. She studied chemistry at Albertus Magnus College, medicine at the University of Vermont, and became certified in her field in Boston in 1956. Whilst working as a Paediatric cardiologist at the University of Iowa she noticed that children with a rare type of heart defect called pulmonary valve stenosis often had a characteristic physical appearance with short stature, webbed neck, wide-spaced eyes, and low-set ears. She presented her first paper on the subject in 1963, and after several more papers and recognition, the condition was officially named Noonan syndrome in 1971. Dr. Noonan moved to the University of Kentucky medical school in 1961, where she served for over forty years. An endowed chair in pediatric research has been established in her name. Aside from the rare distinction of having a medical condition named after her, Noonan has received numerous other honors, including the 1971 Helen B. Frazer Award, the 1985 Harpers Bazaar's Best Women Doctors in America, and later The Best Doctors in America award. She also received the A. Bradley Soule Award from the University of Vermont College of Medicine for dedication to the college as an alumni and mentor to medical students. We thank Dr. Noonan for her diligence, expertise and research in defining and diagnosing Noonan Syndrome. We are all benefactors of her knowledge, professionalism and care If I have seen further than others, it is by standing on the shoulder of giants - Isaac Newton

01.01.2022 CORONAVIRUS AND NOONAN SYNDROME Our new Blog Post is online: https://noonansyndrome.com.au/coronavirus-covid-19-and-noo/

01.01.2022 WE WISH YOU A HAPPY EASTER The NSAA wants to wish all of you a happy, healthy Easter holidays Stay safe, stay well and thanks for your support ... We’d love to see photos of how you are celebrating!

01.01.2022 INTERNATIONAL WOMEN’S DAY In our last post celebrating women on International Women’s Day we want to pay tribute to all the mothers of children with Noonan Syndrome We thank you for you late nights and the early mornings. We thank you for the love, patience, devotion and striving for the best medical care for your child with NS. ... To Mothers, Carers and all Women everywhere helping to raise children with Noonan Syndrome we say thank you

01.01.2022 Happy Mother’s Day To the world you are a mother, but to your family you are the world. - Author Unknown