Stephanie Dykes
  • Female
  • Wills Point, TX
  • United States
Share on Facebook Share

Stephanie Dykes's Friends

  • Melissa Aguilar
  • Margi moakes
  • Renee Anders
  • Heather Payne
  • Larke Lopez
  • Heather Leyhe
  • Mary Melendez Kirby
  • Brett Billmeyer
 

Stephanie Dykes's Page

Latest Activity

Melissa Aguilar and Stephanie Dykes are now friends
Jan 22, 2014
Renata Ławrynowicz left a comment for Stephanie Dykes
"witam Moi chłopcy prawdopodobnie się zakwalifikowali do badań klinicznych w Polsce i będą dostawać lek ale kiedy to nastąpi to jeszcze nie wiem. Pytanie czy CESD wpływa na mózg bo mam bardzo nadpobudliwego chłopca druga choroba u niego…"
Oct 2, 2012
Stephanie Dykes liked Brett Billmeyer's discussion Our First Giveaway!
May 31, 2012
Stephanie Dykes liked Brett Billmeyer's discussion New Survey for Persian Jewish Community Posted
May 31, 2012
Renata Ławrynowicz left a comment for Stephanie Dykes
"Dziękuję za powitanie Stronę znalazłam przypadkowo, nie znam angielskiego bardzo rzałuję. Wiadomości tłumaczy mi komputer. Opiszę o chłopcach i diadnozie choroby jak znajoma mi przetłumaczy na angielski. Pozdrawiam Renata Ławrynowicz"
Feb 27, 2012
Stephanie Dykes left a comment for Renata Ławrynowicz
"Welcome to LAL Solace, we are glad you found us. If you have any questions or would like to talk.  Feel free to message me anytime! Stephanie"
Feb 27, 2012
Stephanie Dykes replied to Brett Billmeyer's discussion Local Media
"This is a great idea and I think it will really help raise awareness for LAL Solace and Lysosomal Acid Lipase diseases!!"
Feb 26, 2012
Stephanie Dykes replied to Brett Billmeyer's discussion Where did you look? Please help!
"Since Dakota was diagnosed so quickly we didn't really search for a diagnosis but searched for treatments, information and others that may have seen the disease before.  Some of the things we searched on google besides the obvious…"
Feb 26, 2012
Stephanie Dykes liked Julia N's page FAQ
Feb 12, 2012
Stephanie Dykes is attending Brett Billmeyer's event

LAL Community Reception at New York City

September 22, 2011 from 6pm to 7pm
An event to honor the LAL Community on September 22, 2011 in New York City. Bringing together key physicians, medical professionals, patients, patient advocates and genetic counselors. Time to be announced. See More
Aug 9, 2011
Stephanie Dykes liked Brett Billmeyer's event Natural History Study...We need YOUR help!
Jun 29, 2011
Stephanie Dykes and Mary Melendez Kirby are now friends
Jun 29, 2011
Stephanie Dykes is attending Brett Billmeyer's event

Natural History Study...We need YOUR help! at Everywhere

June 27, 2011 at 6pm to September 1, 2011 at 7pm
Synageva is currently studying the natural history of early onset (Wolman Disease) LAL Deficiency.  The information from this study is very important to the understanding of Wolman disease since it is so rare and there is no information summarized from large groups of patients available in the literature.  If you are interested in having your child’s data included in this study, please contact one of the active clinical study sites or the sponsor representative listed on …See More
Jun 29, 2011
Heather Leyhe left a comment for Stephanie Dykes
"Your welcome!"
Apr 14, 2011
Stephanie Dykes left a comment for Heather Leyhe
"thank you for joining!"
Apr 14, 2011
Stephanie Dykes replied to Julia N's discussion What is your experience with LAL Deficiency?
"My sweet boy, Dakota, was diagnosed with wolman's disease at 7 weeks old.  He touched so many lives in his short time here.  He was such a sweet heart and fought such an awful battle.  Our ultimate plan was to get a…"
Apr 14, 2011

Profile Information

What brings you to LAL Solace?
All, Other
Do you or someone you know have a LAL Deficiciency Disease?
Yes
If yes, who is effected by LAL Deficiency?
Child

Stephanie Dykes's Photos

  • Add Photos
  • View All

Comment Wall (3 comments)

At 7:47pm on April 14, 2011, Heather Leyhe said…
Your welcome!
At 10:09am on February 27, 2012, Renata Ławrynowicz said…

Dziękuję za powitanie

Stronę znalazłam przypadkowo, nie znam angielskiego bardzo rzałuję. Wiadomości tłumaczy mi komputer. Opiszę o chłopcach i diadnozie choroby jak znajoma mi przetłumaczy na angielski.

Pozdrawiam Renata Ławrynowicz

At 4:13pm on October 2, 2012, Renata Ławrynowicz said…

witam

Moi chłopcy prawdopodobnie się zakwalifikowali do badań klinicznych w Polsce i będą dostawać lek ale kiedy to nastąpi to jeszcze nie wiem. Pytanie czy CESD wpływa na mózg bo mam bardzo nadpobudliwego chłopca druga choroba u niego stwierdzona to Zespół Aspergera.

Pozdrawiam Renata

 

You need to be a member of LAL Solace Patient Community to add comments!

Join LAL Solace Patient Community

 
 
 

© 2019   Created by SandorMax   Powered by

Badges  |  Report an Issue  |  Terms of Service