International Rett Syndrome Foundation - Oregon Page

06/18/2020

Dear Oregon families,

I don’t know about you but I’ve been feeling a little isolated over the past few months. Samantha Brant from IRSF has offered to support a virtual HAPPY HOUR Zoom call so we can connect and see each other and support our Oregon families and connections. If you are available and interested, please bring the beverage of your choice (tea, coffee, juice, water, anything stronger LOL) and join me for our 1st Rett meet up virtual Zoom call this Friday, June 19th, 2020 at 4:00 pm. This will give us the opportunity to introduce our beautiful children (if they feel up for it) and share some special time together. I want this to be stress free for each of you and your families so if you would do some pre meet up homework, I promise it will be easy!

• Your Name and Child’s name
• City you are located in
• Picture of your child with you just in case they aren’t feeling camera ready 😉
• Hardest part of this pandemic for your family
• Positive outcome or something new you have learned during this time

I want each family to have the time for introduction and sharing the above. I look forward to seeing each of your faces and your children’s! If you have any questions ahead of time please reach out to me at [email protected] otherwise I will see you on June 19th, 2020 at 4:00 pm.
Feel free to invite others - can’t wait to see you!
-Joey

Rettsyndrome.org Staff is inviting you to a scheduled Zoom meeting.

Topic: Oregon Families Zoom get together
Time: Jun 19, 2020 04:00 PM Eastern Time (US and Canada)

Join Zoom Meeting
https://us02web.zoom.us/j/83361762826?pwd=cmlVVExhVVd3OWduMkcxemtlVklYQT09

Meeting ID: 833 6176 2826
Password: 167215
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Meeting ID: 833 6176 2826
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Joey Razzano
Oregon Family Empowerment Representative



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About Rettsyndrome.org
As a major private funder of Rett syndrome research, Rettsyndrome.org has funded over $48M in high-quality, peer-reviewed research grants and programs to date. The organization is dedicated to accelerating research to treat and cure Rett syndrome, and empowering families with information, knowledge and connectivity.Rettsyndrome.org, a 501(c) 3 organization, has earned Charity Navigator’s prestigious 4-star rating for its strong financial health and commitment to accountability and transparency. To learn more about our work and Rett syndrome, visit www.rettsyndrome.org or call (513) 874-3020.

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06/11/2020

Please see below for a message from Oregon ABLE regarding new resources to help people understand how COVID-19 stimulus funds may affect benefits. There are also webinars, with guests from Oregon Employment Department, Work Incentives Network and ABLE, being held on Thursday, June 18. We encourage you to participate! Sincerely, Employment First
Register for the 10 a.m. webinar: https://zoom.us/webinar/register/WN_SCrkolOoSQ6gKQ84JyWe0Q
Register for the 6 p.m. webinar at: https://zoom.us/webinar/register/WN_ihEXgSZ4QVuVjvWoMOxrSA
COVID-19 has brought a lot of change and a lot of confusion. To help people with disabilities get the information they need, we’ve created a few resources that can provide them some guidance.
First, there’s a one pager that goes over what the COVID-19 stimulus funds are, how they might affect benefits, and how ABLE can help if they’re now worried about asset limits. Disability Rights Oregon and Oregon Developmental Disabilities Services worked with us in creating it. You can find a link to it athttps://www.oregonablesavings.com/s/CovidABLEOnePagerFinal.pdf
Second, on June 18th at 10 a.m. and 6 p.m., we will have webinars that help people with disabilities who are unemployed because of COVID figure out what to do next. Speakers will include someone from the Oregon Unemployment Department, benefits counselors from DHS’ Work Incentives Network (WIN), and an Oregon ABLE representative. We will talk what Unemployment Insurance is and how to get it; how it affects benefits; and what to do if you’re worried about asset limits. Attached is a flyer promoting the event with the link to registration. You can also learn more about it at https://www.oregonablesavings.com/resources
Please, feel free to spread these resources far and wide. We know it’s a scary time for all of us. We’re hoping these tools can help provide at least some comfort and guidance.

Are you unemployed and experience a disability? Wondering what to do next? We can help. Learn about Unemployment Insurance, COVID stimulus funds, how they affect your benefits, and what you can do if you're worried about asset limits. Brought to you by Oregon ABLE Savings Plan, Oregon Employment Dep...

06/10/2020

You've been invited to this page because you are a family member of someone who experiences Rett Syndrome in Oregon (or close to Oregon). I want us to gather virtually every other week or monthly for a HAPPY HOUR. We can't be together physically but we can strengthen our community virtually. This page will mostly be INFORMATIONAL and RELATIONAL.

09/15/2013

Please feel free to download, print, share, email, disseminate!! I've got other Strolls doin' some smack talking about how much money they've raised! Maybe Portland is more of a friend-raiser than a fundraiser? Prove me wrong!

01/30/2013

Attention local Rett families! Stoel-Rives is looking for Dragon Boat Paddlers for their team called "Reverse Rett-Karina's Crew". Practices are twice a week on the Willamette and races are early June. If you are interested, please message me!

11/09/2012

ODE just released a memo to all Oregon school districts reminding them of their obligation to provide full time services to transition age students with disabilities. The full memo is attached, but the key quote is this: "The obligation to provide a full day of school to these students is a Division 22 Standard and is required by state law. The Deputy Superintendent may find districts that fail to provide those programs to be “non-standard,” requiring remediation of that practice."

Thank you, Deputy Superintendent Saxton and Assistant Superintendent Hagen-Gilden for making this important issue so clear! Thanks, too, to Disability Rights Oregon and Youth Rights and Justice for their role in keeping this issue on the front burner

10/23/2012

Found out about this great resource! Check it out - beds for kids with special needs!

http://www.bellabeds.org/

10/15/2012

Stroll families - did you geet a chance to unpack your team bags and find the application for the DM study in Boston? If your child is under 10, positive for Mecp2 and you are willing to travel to Boston for a 3 day intake with travel reimbursable up to $1000, fill out the application today! Jade is going in early November for her appointment...

06/29/2012

We recommend northwest families make the trek to Katie's Clinic in Oakland twice a year. Learn more here:

06/26/2012

Five simple and terrific things I heard at the IRSF conference:

1.) Even those of us with adult daughters sometimes need reminders, maybe especially those of us who've been at this for awhile. Our children are apraxia. To be reminded of the definition see: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004944/.

Some would say that Rett syndrome's most disabling feature is apraxia. To see what Linda Burkhart writes about apraxia see: http://www.lburkhart.com/hand_rett_syndrome_7_07.pdf.

I know this, have known this for quite awhile, and still I was struck by this reminder. Our daughter may need as long as 20-30 seconds to respond. Time it. It feels like a long time to me. How often do we really give them this gift of time? And during that time repeating the question can be counterproductive. How often do we refrain from repeating our question or request? We are in a hurry. We grow impatient. Great reminder to slow down, watch, and listen.

2.) A simple, but brilliant idea for some of the little ones. We saw a photo of a child sitting in a round, plastic laundry basket. A small, basic padded "board" behind her back gave her support for sitting. The child could sit independently this way, and toys didn't roll or fall away, rather they stayed within arms reach. Brilliant!

3.). For those in the US: I was reminded by an IRSF Regional Rep that if you are looking fir services in your area one resource can be found by dialing 211 for information on resources in your area. I remember this from long ago, but I'd forgotten. Simple and smart!

4.) Marcy Fritter, the new IRSF Manager of Special Events, shared that $400,000 is raised by all the "small" fundraisers alone! So if you've never tried fundraising for IRSF remember that every little bit counts, cuz it adds up. Even a small bake sale at work can raise hundreds. A great reminder that not every fundraiser has to sign up for something "big".

5.) Many researchers reminded us that keeping our children healthy, active, and engaged means they will be better prepared when treatments do come. It's something we are all trying to do anyway, but hearing this gives me renewed purpose.

I can share more. Just thought I'd start with these.

Peace be with you all.

Evie

Evie Lynn Swan
Annie, 23
Reno, Nevada and Manchester, Maine, USA

Apraxia is a disorder of the brain and nervous system in which a person is unable to perform tasks or movements when asked, even though: