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Lupus Foundation of Mid and Northern New York  | Blog
Your comments and suggestions are always welcome. This blog site provides a forum for electronic feedback and is monitored to ensure any concerns are addressed in a timely manner.
If you need additional information, please contact us by e-mail at lupusmidny@aol.com or by phone at 315-829-4272 or toll free 1-866-258-7874. Thank you.
Posted
by Bill on 6/17/2008 at 4:48:51 PM EST.
Subject: photosensitivity tips |
| To Sam and any others who want to know some tips about photosensitivity - There are many things you can do besides using sunscreen. You can purchase clothes that reflect UV rays, wear hats that have UV protection. Rit Dye has a product you can wash into your clothes for UV protection. Plan your outings for late in the day. Tint your windows in your car and home. Does anyone else have some good ideas? Please share... |
Posted
by Kathleen on 6/12/2008 at 12:30:21 AM EST.
Subject: Bronx Lupus |
| Tasha have your sister contact the SLE Lupus Foundation at 212-685-4118. They have a Bronx Co-op. Good luck. |
Posted
by Maryrose Bullock on 6/12/2008 at 12:24:21 AM EST.
Subject: Appreciation |
| Kathleen
I want to take a moment to let you know how much I appreciate YOU and all the wonderful people that I have meet from the Lupus Foundation. I have learned so much about S L E from everyone. I have learned that I was not alone;which has made the biggest different in my life. You are one of the many angels that are in my life. I also want to thank you and everyone for all the hard work that went into the Symposium. I thought that it was WONDERFUL and full of good ideas. My sorroity sisters and family members that were with me also agree that it was wonderful and want to know if they could come back again next year. Finally I would like to thank you for my surprise award for public awareness of Lupus. I was totality Surprised! I did not see that one coming.:) :) :) :)
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Posted
by Sam on 5/31/2008 at 3:56:42 PM EST.
Subject: photosensitivity |
| What are some tips other than sun block for photosensitivity? |
Posted
by Tasha Moore on 5/15/2008 at 11:49:31 AM EST.
Subject: My sister and Lupus |
| My sister has Lupus and I am very interested in finding out more information for her sake. She now resides in Bronx, NY getting medical help from up there. |
Posted
by Bridget and David Snitchler on 5/9/2008 at 9:11:08 PM EST.
Subject: symposium |
| Thank you for such an encouraging symposium. |
Posted
by David on 5/9/2008 at 5:09:11 PM EST.
Subject: Symposium |
| Bravo on the symposium! |
Posted
by Mari-Kristine Neyhart on 9/20/2007 at 8:57:43 AM EST.
Subject: New York State Fair Booth |
| To the Lupus Foundation of Mid and Northern NY:
Thank you for honoring me with the 2006 Awareness Award. I can not thank you enough for the continued support you all show for the State Fair booth. Your warmth and friendliness is what brings our visitors back year after year. Your attentiveness is what sets the standards for next year's volunteers. Together we make this event a success. Keep up the good work. |
Posted
by Donna Gloo on 8/14/2007 at 11:22:33 AM EST.
Subject: Charity Golf Tournament |
| I enjoyed volunteering at the golf tournamet last week and meeting all of you! You put on an outstanding fundraising event! |
Posted
by jackie on 7/25/2007 at 11:10:25 AM EST.
Subject: thank you |
| i dont take i could make it with out you thank you |
Posted
by Jennifer on 8/27/2006 at 10:48:59 AM EST.
Subject: Thanks for the information |
| Thank you for all the great information that you provided at the State Fair. It is refreshing to meet people who really care abut us as patients. Keep up the good work, it is appreciated |
Posted
by Brigid for team A-Nit-A Cure on 8/20/2006 at 1:54:09 PM EST.
Subject: golf outting |
| Hello one and all! We just wanted to extend our sincere congratulations to all of the volunteers, board members, etc. on a job well done at the outting this past Friday. The weather was perfect, but more then that, the entire event was well planned, enjoyable, and "top notch". Our team was very well taken care of from beginning to end. There is not one suggestion we could make for improving our day. That alone shows the level of planning and dedication that went in to making this event such a success.
Our dinner guest loved the setting, the food, etc. and I loved that they were welcome to participate!
Again, our sincere congratulations on a job VERY WELL done!
See you again on August 10, 2007! :0)
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