MightyMouse Posted September 23, 2005 Report Share Posted September 23, 2005 Hello everyone,Many of you may not know Dan Smith directly, but he is the husband of Linda Smith, and together, using their own money, they started the National Dysautonomia Research Foundation (NDRF). While DINET and NDRF are not related, we are very supportive of their work and they are supportive of ours. Many of our members belong to both nonprofits and post on both forums.I wanted to let you know that Dan is still quite ill, and critical. He has severe complications of ulcerative colitis and needs to have his colon removed. However, things have been complicated by the fact that he also has diabetes. He is currently too sick for surgery--they removed most a blood clot he had in his renal artery yesterday and were trying to get the rest of it today. He requires a blood transfusion also. Linda is with him most of the day--which must be exhausting for her. She has dysautonomia due to a genetic norepiniphrine transporter defect. Dan and Linda have given a great deal of themselves to make the NDRF available to everyone who needs it. Even though they are not members of DINET, they are part of our extended family of people who have dysautonomia affecting their lives every day and have tried hard to make a difference. If you would like to do a little something to boost both their spirits, you might consider mailing a card to Dan at the hospital. He will likely be there for a least several weeks at a minimum.Daniel P. Smith Care of:Saint Mary's Hospital 1216 Second Street SW Rochester, Minnesota 55902If you cannot write, please don't feel badly--just continue to keep them in your thoughts. If you know them at all, you know that holding them in your thoughts is just as important to them as sending a physical card.Love to you all. Nina Quote Link to comment Share on other sites More sharing options...
DancingLight Posted September 23, 2005 Report Share Posted September 23, 2005 Thank you Nina for letting us know.It made my heart break to hear this news...Can you pass on our posts to them if we can't send cards?It is hard to make sense of such thing happening to people who give so much of themselves to help others. It's so hard for me to deal with how bad things happen to the best of people.I hope that they will both know during this difficult time how many people are thinking about them. And how much they have changed MANY, MANY lives with their work.NDRF, the people I met there, and the information I found there CHANGED my life in powerful and profound ways.Emily Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted September 23, 2005 Report Share Posted September 23, 2005 A few years ago, Linda and Dan were most generous with email and telephone time with myself, and others. I made that board part of my daily life, though many familiar names have long since gone. The NDRF foundation saved my sanity many times due to the hard work of Linda and Dan and the VITAL information provided there and on video.As posted on NDRF, my thoughts and prayers are sent to Linda and Dan. I think of them daily and even throughout the day.Thanks for posting the hospital address Nina.I will get a card the next time I am out! Quote Link to comment Share on other sites More sharing options...
Karen Posted September 23, 2005 Report Share Posted September 23, 2005 Thanks for posting this, Nina. NDRF was my lifeline for many years and I'm sorry to hear about what they are going through right now. I will pray for them and send them a card tomorrow. Hope you are feeling a bit better. karen Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted September 23, 2005 Author Report Share Posted September 23, 2005 Thanks folks...and you don't have to buy a card...you can make one which I'm sure will be just as appreciated.I'm thinking of making a card with my students tomorrow--having them get their paint covered hands all over some oaktag paper. then I can fill in the inside hellos.I can print out the posts and mail them to the Smiths, if that's okay with the folks who are posting--I don't want to send anything that you didn't intend to share publicly. So, if you DON"T want your post printed and mailed, please say so and I'll exclude it.Nina Quote Link to comment Share on other sites More sharing options...
Poohbear Posted September 23, 2005 Report Share Posted September 23, 2005 Thanks for posting this info and providing the address!! I check the NDRF site regularly also so I knew he was sick and it's nice to see folks on this board supporting them as well.We are all in this together for sure and we all can use lots of support!!I'm praying for both of them and their families and pray that he will regain his strength and start healing! Quote Link to comment Share on other sites More sharing options...
michiganjan Posted September 23, 2005 Report Share Posted September 23, 2005 To Dan and Linda, You have no idea of what finding the NDRF several years ago has meant to me. Being able to access the forum was a lifeline and it got me through a lot of POTS misery.I am sorry that Dan is so sick. I am thinking of you both and praying for you. I do carry you around with me and think of you several times a day. You are not alone. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted September 23, 2005 Report Share Posted September 23, 2005 To Dan and Linda, you are in my thoughts and prayers as you go through this really difficult time. You are very special people and loved and respected by so many. There are many many people pulling for you Dan!!!! morgan Quote Link to comment Share on other sites More sharing options...
corina Posted September 23, 2005 Report Share Posted September 23, 2005 to dan and linda.although i don't know you, i'm sending my best wishes for recovery! i have been reading the book you published on ndrf (partly) whcih helped me a lot, thanks for that!!!corina Quote Link to comment Share on other sites More sharing options...
baby_boy Posted September 23, 2005 Report Share Posted September 23, 2005 I have used that site quite a few times. Mighty Mouse thanks for printing this out and sending it directly to Dan Smith. Although times may be hard and the pressure is great look to the future and keep your future plans close to heart. Your in a place that has the best care for you at your time of grief and you can and will come through this. I will keep you in my thoughts and pray for you daily.I cant post a card as im in the UK but if i can get the pennys together ill send mine off Quote Link to comment Share on other sites More sharing options...
Ernie Posted September 23, 2005 Report Share Posted September 23, 2005 Hi Linda and Dan,I am sorry you are going through such a horrible time. I am praying for all of you so that Dan will come back fine.You have so much for us!Ernie Quote Link to comment Share on other sites More sharing options...
taylortotmom Posted September 23, 2005 Report Share Posted September 23, 2005 Dan and Linda: You have been such a tremendous blessing to the dysautonomia community. I pray that Dan's surgery goes well and will be keeping you in my thoughts. Thank you for what you have done for the chronically ill. May the love you have shown be returned to you two-fold. God bless and keep you!Sincerely,Carmen Taylor Quote Link to comment Share on other sites More sharing options...
Aprilmarie52 Posted September 23, 2005 Report Share Posted September 23, 2005 Dan and Linda, I am so sorry that things are not going well. I will keep you in my thoughts and prayers. Quote Link to comment Share on other sites More sharing options...
Poohbear Posted September 23, 2005 Report Share Posted September 23, 2005 Dan & Linda,You are in my thoughts and prayers. I'm praying for a speedy recovery and complete healing along with quality Doc's & nurses that are both helpful and nurturing emotionally too!!Meagan (Poohbear aka Search4hope) Quote Link to comment Share on other sites More sharing options...
steph37822 Posted September 23, 2005 Report Share Posted September 23, 2005 oops Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted September 24, 2005 Report Share Posted September 24, 2005 Dan and Linda,Your web site was the first exposure to any kind of support when I was first diagnosed with POTS. I met lots of wonderful people---and made a lot of new friends.I have been following the updates and postings on NDRF, and you continue to be in my prayers. Take Care----HUGSJulie :0) Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted September 25, 2005 Author Report Share Posted September 25, 2005 I will be printing and mailing tomorrow morning, so if there is anyone else who'd like to add their thoughts before I mail off this thread, I thougth I'd let you know it's 'last call' Nina Quote Link to comment Share on other sites More sharing options...
Sunfish Posted September 27, 2005 Report Share Posted September 27, 2005 (edited) i know i missed "last call" so will try to send something off on my own, but wanted to say thanks for letting us know. since starting school i haven't been on NDRF at all so had no idea. having a foot in the UC world myself, i can't imagine all the family is dealing with at the moment....i just "saw" dan on the NDRF tapes last week...they're definitely all in my thoughts & prayers....and this is one of those times i'm glad that i have a store of cards on hand!~melissa Edited September 27, 2005 by Sunfish Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted September 29, 2005 Author Report Share Posted September 29, 2005 Okay, I didn't get to print it out like I'd wanted to earlier this week...so, anyone else who wants to jump in before I get my act together, chime in now. Nina Quote Link to comment Share on other sites More sharing options...
Sunfish Posted September 30, 2005 Report Share Posted September 30, 2005 nina - i think dan's at mayo now....do you have the new address??thanks! melissa Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted September 30, 2005 Author Report Share Posted September 30, 2005 Mayo and the other hospital are in the same location. Mayo does the surgery, and typically, you'd then stay over at the other hospital, so the address is the same. Quote Link to comment Share on other sites More sharing options...
Sunfish Posted September 30, 2005 Report Share Posted September 30, 2005 gotcha. i figured you were on top of things but have had things lost in hospital mail over the years so just wanted to make sure:-)i'm still going to get a card in the mail, but am definitely adding my thoughts & prayers here as well.melissa Quote Link to comment Share on other sites More sharing options...
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