http://www.curesf.org Work. Pray. Love. Sun, 19 Feb 2012 01:21:28 -0600 hourly 1 http://wordpress.org/?v=3.3.1 http://www.curesf.org/#comment-31 Alicia Bennett Tue, 12 Jul 2011 18:01:22 +0000 http://www.help2saveourkids.com/?page_id=194#comment-31 Thank you to all who are voting to help find a cure for Sanfilippo! I have 3 kids with Sanfilippo, Ciara is 15, Hunter is 13 and Tommy passed away when he was 4. Thank you to all who are voting to help find a cure for Sanfilippo! I have 3 kids with Sanfilippo, Ciara is 15, Hunter is 13 and Tommy passed away when he was 4.

]]> http://www.curesf.org/#comment-26 Elaine Zeighami Sat, 09 Jul 2011 18:52:46 +0000 http://www.help2saveourkids.com/?page_id=194#comment-26 Thank you for sharing with us about Maciek, Arleta, and for coming here. Thank you for sharing with us about Maciek, Arleta, and for coming here.

]]> http://www.curesf.org/#comment-23 Arleta Sat, 09 Jul 2011 12:16:48 +0000 http://www.help2saveourkids.com/?page_id=194#comment-23 Maciek is 3 yrs old, diagnosed with Sanfilippo type A. Help me save my son. Vote every day till August 27. Thank you. Maciek is 3 yrs old, diagnosed with Sanfilippo type A.
Help me save my son.
Vote every day till August 27.
Thank you.

]]> http://www.curesf.org/#comment-22 Karina Fri, 08 Jul 2011 16:45:03 +0000 http://www.help2saveourkids.com/?page_id=194#comment-22 Thank you all for voting for our precious kids who deserve much more than what they get in life!!! Thank you all for voting for our precious kids who deserve much more than what they get in life!!!

]]> http://www.curesf.org/#comment-19 Elaine Zeighami Thu, 07 Jul 2011 20:38:30 +0000 http://www.help2saveourkids.com/?page_id=194#comment-19 Bless you, Karen, and thank you for taking the time to tell us about your beautiful daughter. We share your hope that some time in the near future, answers will be found for this disease. Bless you, Karen, and thank you for taking the time to tell us about your beautiful daughter. We share your hope that some time in the near future, answers will be found for this disease.

]]> http://www.curesf.org/#comment-18 Karen Vantol Thu, 07 Jul 2011 20:30:28 +0000 http://www.help2saveourkids.com/?page_id=194#comment-18 I lost my daughter Lindsay Rose on February 13th, 1993 at the young age of 8 from San Fillipo Syndrome Type A. She was diagnosed at the University Of Michigan, Ann Arbor by Dr. Joseph Munzer. We were so grateful to him as it took us 5 years to have Lindsay Rose diagnosed. We were in shock when he told us how long Lindsay Rose had to live with the age life expectancy of 8 years to 11years. Lindsay Rose was far more progressed with this dreadful syndrome so we cherished the time we had with her. It's been 18 years since she passed and I only hope a cure will be found so others don't have to say they lost there child to this. I lost my daughter Lindsay Rose on February 13th, 1993 at the young age of 8 from San Fillipo Syndrome Type A. She was diagnosed at the University Of Michigan, Ann Arbor by Dr. Joseph Munzer. We were so grateful to him as it took us 5 years to have Lindsay Rose diagnosed. We were in shock when he told us how long Lindsay Rose had to live with the age life expectancy of 8 years to 11years. Lindsay Rose was far more progressed with this dreadful syndrome so we cherished the time we had with her. It’s been 18 years since she passed and I only hope a cure will be found so others don’t have to say they lost there child to this.

]]> http://www.curesf.org/#comment-17 Elaine Zeighami Thu, 07 Jul 2011 14:07:07 +0000 http://www.help2saveourkids.com/?page_id=194#comment-17 Had to be approved first, Kimberly. Thanks for the link. Had to be approved first, Kimberly. Thanks for the link.

]]> http://www.curesf.org/#comment-16 Kimberly Pruett Thu, 07 Jul 2011 13:40:10 +0000 http://www.help2saveourkids.com/?page_id=194#comment-16 I attached Mia's web site, but it is not showing up on the reply.... I attached Mia’s web site, but it is not showing up on the reply….

]]> http://www.curesf.org/#comment-15 Kimberly Pruett Thu, 07 Jul 2011 13:39:22 +0000 http://www.help2saveourkids.com/?page_id=194#comment-15 Mia Pruett has Sanfilippo type C and is 18 years old. Mia Pruett has Sanfilippo type C and is 18 years old.

]]> http://www.curesf.org/#comment-12 Team Sanfilippo Foundation Tue, 05 Jul 2011 22:58:11 +0000 http://www.help2saveourkids.com/?page_id=194#comment-12 Note to readers: Rebecca, or Becky, lives in Dublin, Ireland, and has Sanfilippo Type 3B. Sanfilippo Syndrome occurs to children all over the world, and to both sexes equally. It seems to occur more commonly in people of Northern European origin, but probably no population group is free from risk. It undoubtedly goes undiagnosed in regions with little medical care. Note to readers: Rebecca, or Becky, lives in Dublin, Ireland, and has Sanfilippo Type 3B. Sanfilippo Syndrome occurs to children all over the world, and to both sexes equally. It seems to occur more commonly in people of Northern European origin, but probably no population group is free from risk. It undoubtedly goes undiagnosed in regions with little medical care.

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