Phelan-McDermid Syndrome Foundation Australia | Non-profit organisation

Phelan-McDermid Syndrome Foundation Australia

Phone: 0415091139

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25.01.2022 Day 189/365 days of Phelan lucky This Monday was a very busy day today. We are so thankful we got some beautiful pics of Emily at her day placement today by ...her wonderful carer. Emily Kate was very happy to go for a drive to the shops to do some shopping one of her favourite activities of course and then whilst having a rest she loves to watch Old Hi5 videos singing some of her favourite songs on the IPad. Emily just lights up anywhere she goes which is beautiful too Tom told us tonight he ran into his Aunty Lin as well this morning whilst he was out looking for bargains as well So it’s another Phelan lucky day once again even after a afternoon thunderstorm with some hail and hopefully it didn’t do too much damage today Take care. Chris #PMSF #phelanlucky #forEmilyandTom #harmerstyle #harmerfamily #ForEmily #fortommy #ForSammy #forJoanna #forEmilyandTom #forOlivia #forJack #forkyle #forChelsea #forAva Below is the link to the GoFundMe page that was made to help other families with PMSF children attending future events in Australia so please consider this wonderful organisation who is always trying to keep our community connected and helping others. Thank you https://www.gofundme.com/f/365-days-of-phelan-lucky-harmer- Don’t forget to share to raise awareness for Phelan Mcdermid syndrome

24.01.2022 Guess what’s coming?! That’s right it’s International Phelan-McDermid Day! PMSF Australia have declared this as an awareness day here in Australia. ... This October 22 we ask you to wear something GREEN to show your support Take a pic & send it to us to share on social media #internationalphelanmcdermidday2020 #pmsf #pmsfaustralia #unitedasone #oct22

23.01.2022 The life of a Phelan-McDermid parent plus a little Check out this gorgeous girl & her journey Chelsea's World

23.01.2022 Much love to all our beautiful families that need some extra LOVE right now Hugs

23.01.2022 HAPPY BIRTHDAY TO LISA, ONE OF OUR BEAUTIFUL DIRECTORS! WE WISH YOU A DAY FULL OF HAPPINESS, LOVE & LAUGHTER

22.01.2022 Congratulations to Dr Kolevzon on being named a Rare Champion of Hope!

22.01.2022 Congratulations Chris Harmer on reaching the 1/2 way mark on your 365 day Phelan Lucky journey

21.01.2022 Happiest of birthdays to our wonderful QUEEN, Dr Katy Phelan! This picture was from Katy’s trip DOWN UNDER in 2017. (Sue Lomas pointing the finger at Katy, stating that Katy is older ) HAPPY (Aussie) BIRTHDAY KATY

21.01.2022 We are ALL multimodal communicators. We use a variety of strategies to express our thoughts. The same is true for our AAC learners. Communication is about conne...ction. If we insist on one method of communication, we put our connection at risk. Respect whatever form of communication your learner chooses to use. Model language that might meet their communication needs using the strategy you would like to teach. Image description: Bitmoji standing, surrounded by many different kinds of communication methods (clockwise from top center: robust AAC systems, pictures & choice boards, hand writing, gestures, texting, sign language, facial expression, body language, typing, mid-tech devices, speech & vocalizations Text reads: Multimodal Communication Value all forms of communication! Respect how your learner choose to communicate. Acknowledge what they have expressed and model the mode you want to teach.

20.01.2022 Phelan Lucky out in Cali A woman stopped us on our hike to tell us that she was also Phelan Lucky because of her granddaughter! Rare diseases bringing people together! #phelanmcdermidsyndrome #phelanlucky

19.01.2022 Day 185/365 days of Phelan lucky. It was a great day today and we really enjoyed it too. Tonight we had a wonderful chat with Tom and his carer and he told us... what he did today. He went swimming at the oasis and also Ten pin bowling and I asked did he get a strike? He said No But he did say when I asked who won today and he said he did. So hopefully everyone has had a Phelan lucky day today and as tomorrow is Friday enjoy Chris #PMSF #phelanlucky #forEmilyandTom #harmerstyle #harmerfamily #ForEmily #fortommy #ForSammy #forJoanna #forEmilyandTom #forOlivia #forJack #forkyle #forChelsea #forAva Below is the link to the GoFundMe page that was made to help other families with PMSF children attending future events in Australia so please consider this wonderful organisation who is always trying to keep our community connected and helping others. Thank you https://www.gofundme.com/f/365-days-of-phelan-lucky-harmer- Don’t forget to share to raise awareness for Phelan Mcdermid syndrome

17.01.2022 Key Word Sign Awareness Day

17.01.2022 https://themarketherald.com.au/neuren-pharmaceuticals-asx/

16.01.2022 Day 241/365 days of Phelan lucky . This morning I got to play a game of golf at Wagga’s pitch and putt thankfully I got on the course and finished just before... the rain came and boy did we have a downpour and a half. Tom went out to do the grocery shopping before he started his day work and then went ten pin bowling. This afternoon he went for a drive to see some animals at North Wagga. Emily Kate also had a wonderful day and visited the dentist and enjoyed this as well. So I hope you have had a phelan lucky day too. Chris #PMSF #phelanlucky #forEmilyandTom #harmerstyle #harmerfamily #ForEmily #fortommy #ForSammy #forJoanna #forEmilyandTom #forOlivia #forJack #forkyle #forChelsea #forAva Below is the link to the GoFundMe page that was made to help other families with PMSF children attending future events in Australia so please consider this wonderful organisation who is always trying to keep our community connected and helping others. Thank you https://www.gofundme.com/f/365-days-of-phelan-lucky-harmer- Don’t forget to share to raise awareness for Phelan Mcdermid syndrome

15.01.2022 Day 191/365 days of Phelan lucky This Wednesday was a very wet day and lots of rain then sunshine then rain and so on. I went for a bike ride this mor...ning and unfortunately picked the wrong time and got very wet Thankfully Tom was enjoying a milkshake from Wendy’s yesterday after his time at the library and just wanted to share this photo with you all. Tonight we also spent some time together through zoom studying the passage from Sunday’s church service and would like to wish everyone a very special Phelan lucky day tomorrow Chris #PMSF #phelanlucky #forEmilyandTom #harmerstyle #harmerfamily #ForEmily #fortommy #ForSammy #forJoanna #forEmilyandTom #forOlivia #forJack #forkyle #forChelsea #forAva Below is the link to the GoFundMe page that was made to help other families with PMSF children attending future events in Australia so please consider this wonderful organisation who is always trying to keep our community connected and helping others. Thank you https://www.gofundme.com/f/365-days-of-phelan-lucky-harmer- Don’t forget to share to raise awareness for Phelan Mcdermid syndrome

15.01.2022 Day 190/365 days of Phelan lucky Well today was another wonderful day in Wagga Wagga town Toms carer took these photos of Tom at our local library as he pic...ked out a book by his favourite author and also one of his favourite movies Shark tail. We have had a great phelan lucky day today too Take care Chris #PMSF #phelanlucky #forEmilyandTom #harmerstyle #harmerfamily #ForEmily #fortommy #ForSammy #forJoanna #forEmilyandTom #forOlivia #forJack #forkyle #forChelsea #forAva Below is the link to the GoFundMe page that was made to help other families with PMSF children attending future events in Australia so please consider this wonderful organisation who is always trying to keep our community connected and helping others. Thank you https://www.gofundme.com/f/365-days-of-phelan-lucky-harmer- Don’t forget to share to raise awareness for Phelan Mcdermid syndrome

14.01.2022 Today is International Day of Sign Languages. To show his support, our very own Prime Minister had a go at signing some #Auslan. Well done Scott Morrison! ... #AuslanCommunityLeadersChallenge2020 #InternationalDayofSignLanguages #scomo

14.01.2022 Day 243/365 days of Phelan lucky This Saturday we were very lucky to see Lozzy, Emily and Tom We went out to a garage sale and met some lovely people who ...were so kind when I asked did they have any puzzles as that’s what Tom is always looking for. They went above and beyond and went looking for some puzzles through the house and kindly gave them to Tom to enjoy . A huge thanks to these very kind people After we dropped them home Tom was picked up one of the carers to go and have dinner with another client and he had a wonderful time tonight. So please keep Phelsn lucky and look forward to the next instalment Chris #PMSF #phelanlucky #forEmilyandTom #harmerstyle #harmerfamily #ForEmily #fortommy #ForSammy #forJoanna #forEmilyandTom #forOlivia #forJack #forkyle #forChelsea #forAva Below is the link to the GoFundMe page that was made to help other families with PMSF children attending future events in Australia so please consider this wonderful organisation who is always trying to keep our community connected and helping others. Thank you https://www.gofundme.com/f/365-days-of-phelan-lucky-harmer- Don’t forget to share to raise awareness for Phelan Mcdermid syndrome

14.01.2022 How have you been saying "hello" during these interesting times? Kelly Tooley created this grid with some fun, socially distanced ways! Photo by @Keltool

13.01.2022 Day 194/ 365 days of Phelan lucky This Saturday was a very special day for us as we were invited out to share our faith with others at a special course. T...onight we spoke with Tom about how his day was as well. He was also very happy and he told us he went for a big drive in the country locally. He and Emily are both Very excited to be able to see us tomorrow so we are sure phelan lucky Chris. #PMSF #phelanlucky #forEmilyandTom #harmerstyle #harmerfamily #ForEmily #fortommy #ForSammy #forJoanna #forEmilyandTom #forOlivia #forJack #forkyle #forChelsea #forAva Below is the link to the GoFundMe page that was made to help other families with PMSF children attending future events in Australia so please consider this wonderful organisation who is always trying to keep our community connected and helping others. Thank you https://www.gofundme.com/f/365-days-of-phelan-lucky-harmer- Don’t forget to share to raise awareness for Phelan Mcdermid syndrome

13.01.2022 Day 240/365 days of Phelan Lucky This Wednesday was a another warm day and a few drops of rain this evening. Emily went for some more drives today Tom also... enjoyed his day today and was a bit anxious when they drove the car through the car wash before heading to the library to pick out some of his favourite books. Chris #PMSF #phelanlucky #forEmilyandTom #harmerstyle #harmerfamily #ForEmily #fortommy #ForSammy #forJoanna #forEmilyandTom #forOlivia #forJack #forkyle #forChelsea #forAva Below is the link to the GoFundMe page that was made to help other families with PMSF children attending future events in Australia so please consider this wonderful organisation who is always trying to keep our community connected and helping others. Thank you https://www.gofundme.com/f/365-days-of-phelan-lucky-harmer- Don’t forget to share to raise awareness for Phelan Mcdermid syndrome

11.01.2022 Today was scheduled to be PMSF Australia’s Annual Golf day event. Unfortunately due to Covid, this event was postponed from May until today & then cancelled due to restrictions still being in place. The wonderful guys from William Buck decided to go ahead & played a round at Moore Park Golf Club & made a kind contribution to the foundation.... Thank you William Buck for your continuous support!

10.01.2022 Day 195/365 days of Phelan lucky And so ends another wonderful weekend this Sunday night I hope you all have enjoyed some special time together this weekend ...and maybe even Phelan lucky too ? Today we spent some time with Emily and Tom At home and it was great catching up with them too this afternoon they were both very happy watching Hi5 on YouTube and tom has his Coles bag ready to take back home with all his stuff he like to share with the group home. We also received a very special photo of tom holding the house phone to his sisters ear so she could talk to one of her old carers at another group home. Emily was very happy with Tom doing this for her. Well done buddy. Chris #PMSF #phelanlucky #forEmilyandTom #harmerstyle #harmerfamily #ForEmily #fortommy #ForSammy #forJoanna #forEmilyandTom #forOlivia #forJack #forkyle #forChelsea #forAva Below is the link to the GoFundMe page that was made to help other families with PMSF children attending future events in Australia so please consider this wonderful organisation who is always trying to keep our community connected and helping others. Thank you https://www.gofundme.com/f/365-days-of-phelan-lucky-harmer- Don’t forget to share to raise awareness for Phelan Mcdermid syndrome

10.01.2022 In this house, we accommodate Autistic people. We rock, spin, and happy flap, We do scripting. We do routines and visual schedules. We do respect.... We do laughter. In this house, we love and we accept. We encourage and we support. We presume competence. Because in this house, we celebrate neurodiversity. Image shared with gracious permission of The Neurodivergent Teacher (available to download for home use). Classroom version in first comment below.

10.01.2022 Have you registered for the Global running week? Register below #RunLikeAHero #pmsfaustralia #phelanmcdermidsyndrome #pmsf #runlikeaherophelan #unitedasone

09.01.2022 Day 182/365 days of Phelan lucky So I am very thankful to everyone who has been following me and 365 days of Phelan lucky the last six months as today is t...he halfway mark and I would like thank especially the whole PMSF community for pitching in whilst I was unavailable due to my operation recently and sharing their stories and pictures. Today was also a wonderful day and even though early this morning it was foggy and cool it turned around to a beautiful sunny day once again. We had a great chat with Tom tonight at his group home and Emily was already in bed resting but Tom told us he had a great day today and was very happy too. I am so looking forward to the next six months of Phelan lucky and hope everyone is well safe and happy Chris. #PMSF #phelanlucky #forEmilyandTom #harmerstyle #harmerfamily #ForEmily #fortommy #ForSammy #forJoanna #forEmilyandTom #forOlivia #forJack #forkyle #forChelsea #forAva Below is the link to the GoFundMe page that was made to help other families with PMSF children attending future events in Australia so please consider this wonderful organisation who is always trying to keep our community connected and helping others. Thank you https://www.gofundme.com/f/365-days-of-phelan-lucky-harmer- Don’t forget to share to raise awareness for Phelan Mcdermid syndrome

09.01.2022 SHINE GREEN! We have an event page for International Phelan-McDermid Syndrome Awareness Day. Check it out and share it with your friends. This is where we will post updates throughout the month leading up to OCT 22nd. Feel free to post your photos to the event page to let everyone know how what you are doing! #pmsad #phelanmcdermid #PMSF

08.01.2022 Day 184/365 days of Phelan lucky A very sunny and wonderful day today I was very fortunate to go to one of our bible study participants home tonight We on...ly had 5 in attendance so no worries with social distancing So thankful to my friends Terry and Kim for taking me there and back again I hope everybody is Phelan lucky Chris #PMSF #phelanlucky #forEmilyandTom #harmerstyle #harmerfamily #ForEmily #fortommy #ForSammy #forJoanna #forEmilyandTom #forOlivia #forJack #forkyle #forChelsea #forAva Below is the link to the GoFundMe page that was made to help other families with PMSF children attending future events in Australia so please consider this wonderful organisation who is always trying to keep our community connected and helping others. Thank you https://www.gofundme.com/f/365-days-of-phelan-lucky-harmer- Don’t forget to share to raise awareness for Phelan Mcdermid syndrome

08.01.2022 HELP!!! #PhelanLucky 2021 is right around the corner! Phelan Lucky is in search of BIG name personalities with BIG followings to help us promote our 2021 #Phe...lanLucky campaign to benefit the Phelan-McDermid Syndrome Foundation. We have been so fortunate to have had so many incredible people help us get to where we are today. We are looking to grow our #PHamily of influencers and can only do that with your help. Take a minute and think of who you know that knows someone in a position to help us. Besides, who doesn't want a cool shirt for St. Paddy's Day! The ask is easy and fun: 1.Take a photo/video wearing one of our really cool shirts (we will send it to them in late December/early January) along with all the details. 2. Post their picture/video to THEIR social media sites (tagging us) with the link to order shirts DURING our 22 day campaign in January 3. We will share their post (and any info they'd like us to share - think links to upcoming events, marketing, season premiers, new albulms, products etc) and gain them tons of loyal adoring fans who will be forever grateful for their support and philanthropic spirit. PLEASE SHARE THIS POST! You never know who knows someone with a BIG ! Message me if you already have someone in mind. For those of you who took the time to read this incredibly long post, thank you! #22q13 #yournewfavoriteshirt #ROCKyourshamROCKS #WhoDoYouKnow

08.01.2022 Get the tissues This is just the sweetest

07.01.2022 Day 186/ 365 days of Phelan lucky Well this Friday was great to get to work to visit all my former workmates and have lunch with them. We also rang Emily a...nd Tom at their group home and tom was very happy to tell us about his day. He played lawn bowls for sport today and also he does the mail run in the afternoon which is wonderful as he visits his older sister Lozzy at her workplace. As the weekend starts tomorrow I Sincerely hope everyone has a good time and also you might even be Phelan lucky Chris. #PMSF #phelanlucky #forEmilyandTom #harmerstyle #harmerfamily #ForEmily #fortommy #ForSammy #forJoanna #forEmilyandTom #forOlivia #forJack #forkyle #forChelsea #forAva Below is the link to the GoFundMe page that was made to help other families with PMSF children attending future events in Australia so please consider this wonderful organisation who is always trying to keep our community connected and helping others. Thank you https://www.gofundme.com/f/365-days-of-phelan-lucky-harmer- Don’t forget to share to raise awareness for Phelan Mcdermid syndrome

07.01.2022 Today we want to introduce you to another heroin; Lorena from Spain . . Do you want to join us? Go to www.runlikeahero.com .... . Hoy os presentamos a otra heroína; Lorena de España . . ¿Ya te has unido a nosotros? Puedes hacerlo metiéndote en www.runlikeahero.com . . #rlhtestimonial #espana #spain #españa #22q13 #phelanmcdermid #phelanlucky #phelanmcdermidsyndrome #pmsf See more

06.01.2022 November is National Epilepsy Awareness Month. Over 25% of our PMS individuals in the registry have seizures. We are committed to raising awareness about epilepsy. Check our page throughout the month for more information.

06.01.2022 Day 188/365 days of Phelan lucky We had a wonderful Sunday today after some beautiful rain last night. We had a few calls from Tom telling us how he and Emi...ly went to the movies today and saw Trolls 2 world tour They really enjoyed getting out to see this today. I hope everyone has had a nice weekend and that this week coming is a phelan lucky week too? Take care. Chris #PMSF #phelanlucky #forEmilyandTom #harmerstyle #harmerfamily #ForEmily #fortommy #ForSammy #forJoanna #forEmilyandTom #forOlivia #forJack #forkyle #forChelsea #forAva Below is the link to the GoFundMe page that was made to help other families with PMSF children attending future events in Australia so please consider this wonderful organisation who is always trying to keep our community connected and helping others. Thank you https://www.gofundme.com/f/365-days-of-phelan-lucky-harmer- Don’t forget to share to raise awareness for Phelan Mcdermid syndrome

05.01.2022 Well done Ben & Mummy & Daddy too! Thanks School Fun-Run for capturing this wonderful story of Ben. #SchoolFunRun #NaturesWayKidsSmart #BenCummins

05.01.2022 Day192/365 days of phelan lucky . This Thursday was a very social day with quite a few phone calls and then going to the shopping Center and running into some... old friends. It was great to catchup with everyone even if it was only for a short time. This afternoon Tom rang us a few times to tell us about his day and tonight his group home held a bbq dinner and had some visitors from another group home. When we rang Tom was very happy and being very social with everyone. He certainly is Phelan lucky Chris #PMSF #phelanlucky #forEmilyandTom #harmerstyle #harmerfamily #ForEmily #fortommy #ForSammy #forJoanna #forEmilyandTom #forOlivia #forJack #forkyle #forChelsea #forAva Below is the link to the GoFundMe page that was made to help other families with PMSF children attending future events in Australia so please consider this wonderful organisation who is always trying to keep our community connected and helping others. Thank you https://www.gofundme.com/f/365-days-of-phelan-lucky-harmer- Don’t forget to share to raise awareness for Phelan Mcdermid syndrome

05.01.2022 MEMBERSHIP REGISTRATION FOR NEWLY DIAGNOSED FAMILIES https://www.pmsf.org/membership/pmsf-membership/

04.01.2022 Tonight I received a lovely message from a beautiful person that would like to remain anonymous & would love to share this with you all. I see you (PMS families), I see the struggles- the lack of understanding, I see you grieving, I feel your pain- I want to help you, I can't fix you, but I am there to walk with with you for as long as you need me".

04.01.2022 This is one of the super duper amazing Dad’s from Melbourne!

04.01.2022 Day 196/365 days of Phelan lucky Such a glorious day today with a cool morning and plenty of sunshine Emily and Tom also had a wonderful day too? Emily a...lways loves driving around and through the car wash and her carer captured her lovely smile Tom was once again caught in the act of looking through the book he was going to borrow from the local library of his guess what??? Favourite author Pamela Allen. Tom was also very happy his carer who has pointed Tom in the right direction and guided him through all the wonderful things he has made for his family returned today to take him back to all his work placement so that also fantastic buddy. I hope everyone has enjoyed this Phelan lucky day? Chris #PMSF #phelanlucky #forEmilyandTom #harmerstyle #harmerfamily #ForEmily #fortommy #ForSammy #forJoanna #forEmilyandTom #forOlivia #forJack #forkyle #forChelsea #forAva Below is the link to the GoFundMe page that was made to help other families with PMSF children attending future events in Australia so please consider this wonderful organisation who is always trying to keep our community connected and helping others. Thank you https://www.gofundme.com/f/365-days-of-phelan-lucky-harmer- Don’t forget to share to raise awareness for Phelan Mcdermid syndrome

03.01.2022 Day 187/365 days of Phelan lucky Today we had some special time with Lozzy Emily and Tom for lunch it’s always wonderful to see our beautiful children and spe...nding some quality time with them. I hope you all have had a great day too and blessings to everyone for tomorrow which will be Sunday Always Phelan lucky Chris. #PMSF #phelanlucky #forEmilyandTom #harmerstyle #harmerfamily #ForEmily #fortommy #ForSammy #forJoanna #forEmilyandTom #forOlivia #forJack #forkyle #forChelsea #forAva Below is the link to the GoFundMe page that was made to help other families with PMSF children attending future events in Australia so please consider this wonderful organisation who is always trying to keep our community connected and helping others. Thank you https://www.gofundme.com/f/365-days-of-phelan-lucky-harmer- Don’t forget to share to raise awareness for Phelan Mcdermid syndrome

02.01.2022 AUSLAN TUTOR APP IS FREE FOR A FEW DAYS

01.01.2022 Day 193/365 days of Phelan Lucky This Friday was a very cold and wet and windy day today But thankfully we really enjoyed every moment Tonight we spoke ...with Tom about his day and what he got to do. He was so talkative it’s amazing how far he has come along with being so more confident about talking to people he really has such nice friends. He did the Mail run today and was very happy to see his sister Lozzy whilst he was out. For dinner he and Emily had spaghetti bologna’s which they both love to eat. And he is also Phelan Lucky I hope everyone has a wonderful weekend too Chris. #PMSF #phelanlucky #forEmilyandTom #harmerstyle #harmerfamily #ForEmily #fortommy #ForSammy #forJoanna #forEmilyandTom #forOlivia #forJack #forkyle #forChelsea #forAva Below is the link to the GoFundMe page that was made to help other families with PMSF children attending future events in Australia so please consider this wonderful organisation who is always trying to keep our community connected and helping others. Thank you https://www.gofundme.com/f/365-days-of-phelan-lucky-harmer- Don’t forget to share to raise awareness for Phelan Mcdermid syndrome