CoRDS (Center for Rare Diseases)

-

 Enjoy our 2024 CoRDS Winter Newsletter!

 

To register for the 14th Annual Great Plains Rare Disease Summit please select the link below:

 

Registration link: https://app.smartsheet.com/b/form/02776001c2d84f02b0c3118aea6e52cc

 

To login to your new online portal please select the link below and follow the instructions:

 

Online Portal: https://cords.sanfordresearch.org

 

image002.png

 

 

Best Regards,
The CoRDS Team
Sanford Research
2301 E 60th Street N
Sioux Falls, SD 57104
Toll-free: (877) 658-9192

 

 


-----------------------------------------------------------------------
Confidentiality Notice: This e-mail message, including any attachments, 
is for the sole use of the intended recipient(s) and may contain
privileged and confidential information. Any unauthorized review, use,
disclosure or distribution is prohibited. If you are not
the intended recipient, please contact the sender by reply e-mail and destroy
all copies of the original message.

Comments

Post a Comment

Popular posts from this blog

Sadness

-
Image
  You might think, from these postings, that I have the greatest ataxia attitude ever.  But I have my days.  Today I can’t stop crying. This is an incredibly difficult thing to deal with.  Everyone with ataxia (unless they’re in complete denial) has days like this.  Today all my advice about meditation and exercise is out the window.  It’s a grieving day. Some of you may have gotten annoyed with my happy talk.  Please read my posts on Rage, Suicide, Depression.  Happy talk?  As Sheryl Crow said, “No one said this would be easy.” I have no advice for days like this.  They happen.  I just need to ride this out.  I bought black-out shades for my room so I’m going to my dark hole.
Read more

Hi there!

-
Image
 I’m back, bitches!  I’m much worse and have lots to say. I was diagnosed with some type of cerebellar ataxia in 1988.  I was confirmed as SCA6 in 1998 by genetic bloodwork. Here’s a cute dog picture.  The big one is Dasher and she is a trained service dog 🦮.  The puppy is Jax and she is a service dog in training 🐾.  I will have much more to say about service dogs for ataxians later.
Read more

They just don’t get it

-
 I’m in the middle of a huge fight with my sister.  She sent me a very ugly email where one her issues is that I never open my windows. This stuck in my craw, not for the nastiness of the email but for the ignorance that many have about our condition. I can’t stand up.  You need to stand up to open the windows.  I wish I could open my windows.  I live in Florida and it would be lovely to open the windows on cool days, but I can’t.  And I don’t need ignorance making me feel bad about that. I’m sure there are a host of assumptions that able-bodied people make about us.  Please think before you speak.  You may be hurtful.  But maybe that was your intent. There are several instances of this.  The best thing that we can do is tell people what you can and cannot safely do.  Education is the key and ataxia is so rare that even doctors can be uneducated about it.  Sadly, it falls on us to be educational ambassadors.  I know we have enough to deal with.  But we need to add this to the list.
Read more