Comments on: Welcome to the SCDAM Website http://www.scdam.org/welcome-to-the-new-scdam-website SCDAM: Sickle Cell Advocacy: Let's Do this Sat, 04 Feb 2012 09:12:04 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: Nancy Vanderburg http://www.scdam.org/welcome-to-the-new-scdam-website/comment-page-1#comment-328 Nancy Vanderburg Tue, 31 Jan 2012 17:51:41 +0000 http://www.scdam.org/?p=28#comment-328 At an open house I met a woman from Ghana who is here is the USA for schooling. She has twins (three years old, I think) and the boy child has SCD. She told me she had never talked with another parent of a child with SCD. Is there someone in your group who would be interested in at least emailing her and providing some support. I know it would be difficult because her situation is so different with her child not being here and not having access to medications and only has emergency care a distance from the grandmother (who is caring for the children now). Here is what she emailed me, “Thanks so much for the wonderful time you shared with me and our educative conversations. I really enjoyed talking with you. I'm so grateful for everything. I was really tired of trying to connect myself with the internet on this issues because they always refer me to see a doctor with my child. That is the main reason I want to network with somebody personal who is leaving with it or having a child like that. Since, I came in August, I've searched and combed the internet but have almost the same answers. As you know, I don't have my child here. Very frustrating.” Do you know of any family in your group who could relate to her? At an open house I met a woman from Ghana who is here is the USA for schooling. She has twins (three years old, I think) and the boy child has SCD. She told me she had never talked with another parent of a child with SCD. Is there someone in your group who would be interested in at least emailing her and providing some support. I know it would be difficult because her situation is so different with her child not being here and not having access to medications and only has emergency care a distance from the grandmother (who is caring for the children now).

Here is what she emailed me, “Thanks so much for the wonderful time you shared with me and our educative conversations. I really enjoyed talking with you. I’m so grateful for everything. I was really tired of trying to connect myself with the internet on this issues because they always refer me to see a doctor with my child. That is the main reason I want to network with somebody personal who is leaving with it or having a child like that. Since, I came in August, I’ve searched and combed the internet but have almost the same answers. As you know, I don’t have my child here. Very frustrating.”

Do you know of any family in your group who could relate to her?

]]> By: Linda http://www.scdam.org/welcome-to-the-new-scdam-website/comment-page-1#comment-324 Linda Fri, 16 Dec 2011 03:09:27 +0000 http://www.scdam.org/?p=28#comment-324 I am so happy to see this website up. Are there any events organized by your organization to raise awareness of SCD in the twin cities? I would love more information about this if you have it. Thanks! I am so happy to see this website up. Are there any events organized by your organization to raise awareness of SCD in the twin cities? I would love more information about this if you have it. Thanks!

]]> By: Sherry http://www.scdam.org/welcome-to-the-new-scdam-website/comment-page-1#comment-229 Sherry Tue, 02 Mar 2010 13:53:24 +0000 http://www.scdam.org/?p=28#comment-229 Hello, I am a proud grandmother of 8 and have two granddaughters who have struggled with this disease. One granddaughter had a transplant a few years ago and is now disease free but still has the trait; the other with prayers will go through the bone marrow transplant sometime 2011. In the past years Sharon (other grandmother) and Norma (great grandmother), and I have been advocates (Grandma Advocates for Sickle Cell Disease) in helping to raise money and awarness to help my daughter and her husband raise money to help with medical expenses. Both have been on continued battle with insurance companies as well. Most times, we grandmothers have been advocating and funding raising in Des Moines, Iowa, in which I am orginally from. In the past I have contacted the Sickle Cell Disease Association in Illinois for information, brochures, etc. to handout. I would like to know more about the Association in Minnesota and to know if you also provide information for such events? At present I can be contacted via email at Sherry.Brewer@minneapolis.edu. Thank you for taking the time and reading this message. Hello,
I am a proud grandmother of 8 and have two granddaughters who have struggled with this disease. One granddaughter had a transplant a few years ago and is now disease free but still has the trait; the other with prayers will go through the bone marrow transplant sometime 2011. In the past years Sharon (other grandmother) and Norma (great grandmother), and I have been advocates (Grandma Advocates for Sickle Cell Disease) in helping to raise money and awarness to help my daughter and her husband raise money to help with medical expenses. Both have been on continued battle with insurance companies as well. Most times, we grandmothers have been advocating and funding raising in Des Moines, Iowa, in which I am orginally from. In the past I have contacted the Sickle Cell Disease Association in Illinois for information, brochures, etc. to handout. I would like to know more about the Association in Minnesota and to know if you also provide information for such events? At present I can be contacted via email at Sherry.Brewer@minneapolis.edu.
Thank you for taking the time and reading this message.

]]> By: Margit Heald http://www.scdam.org/welcome-to-the-new-scdam-website/comment-page-1#comment-197 Margit Heald Thu, 26 Nov 2009 00:16:04 +0000 http://www.scdam.org/?p=28#comment-197 Hello! My name is Margit Heald. My brothers name is Arty Heald. Arty was recently diagnoised with a rare form of kidney cancer that is associated with SCD. My nephew also carries the SC trait. My brothers kidney has since been removed however, the cancer had already spread to his lungs. He is currently receiving chemo to fight the cancer and luckly for us the chemo has helped. We are all new to SCD and know very little about it. I am looking for resources to help my brother and our family through this tough time. I have included my brother's webpage to this reply. Any help would be great. I was also wondering if SCDAM does any 5k walks or any other awarness fundraisers? Thanks in advance for any information. Margit Heald Hello! My name is Margit Heald. My brothers name is Arty Heald. Arty was recently diagnoised with a rare form of kidney cancer that is associated with SCD. My nephew also carries the SC trait. My brothers kidney has since been removed however, the cancer had already spread to his lungs. He is currently receiving chemo to fight the cancer and luckly for us the chemo has helped. We are all new to SCD and know very little about it. I am looking for resources to help my brother and our family through this tough time. I have included my brother’s webpage to this reply. Any help would be great. I was also wondering if SCDAM does any 5k walks or any other awarness fundraisers?
Thanks in advance for any information.
Margit Heald

]]> By: PAMELA http://www.scdam.org/welcome-to-the-new-scdam-website/comment-page-1#comment-10 PAMELA Mon, 11 May 2009 18:46:33 +0000 http://www.scdam.org/?p=28#comment-10 I AM THE PRESIDENT OF MY SICKLE CELL CHAPTER. WOULD LOVE TO TALK TO SOMONE 239-810-7918 I AM THE PRESIDENT OF MY SICKLE CELL CHAPTER. WOULD LOVE TO TALK TO SOMONE 239-810-7918

]]>