Recent Posts
Page 32 of 48
Elisa Seeger shares her journey with her son, Aidan. Aidan passed away from ALD
Elisa Seeger: Our son, Aidan Jack Seeger, was diagnosed with ALD (adrenoleukodystrophy) on June 2, 2011; he was just 6 years old. ALD is a horrific X-linked metabolic...
Hailey Sampsel’s ONE YEAR ANNIVERSARY. Please do not let us have another POTS teenager write a suicide note saying, “Sorry Mom, I just couldn’t fight anymore.”
Hailey Sampsel: Today marks my one year of being sick. My one year of pain, hospital stays, infusions, doctor visits, tears, hope, and love. One year ago, I...
Brittany Stangley: Moved to Seattle and ANYONE out there that’s ever suffered episodes like this?
Greetings from Seattle! My husband, Michael, myself and our beautiful baby boy, Jacob, now have a new place to call home! I still can’t believe it has happened....
Harlie Valdez: Her Make A Wish event then ER last night. Please pray.
Gabe Valdez: “Harlie was vomiting all day yesterday and was running a fever so we took her in at 10pm last night. You know the drill. We went...
Why That Thing You’re Worried or Angry about Right Now Doesn’t Matter: Article by Eric Spitznagel in Men’s Health:
Gina Szajnuk: I have anger every single day for so many different reasons. So, my older brother sent this article to me yesterday. I stopped my busy day because of...
Harlie Valdez: Can anyone guess when this picture was taken? Answer: TODAY!
Ava is in complete awe of this picture. If I would have seen this picture show up on Facebook, I would have stopped and clicked on it. I would...
NBA Utah Jazz tickets go to Candice Moore. Friends of Stephanie and Gabe Valdez!
Justin and I offered 4 NBA Utah Jazz tickets to the first person to call me tonight. The game is tomorrow night. Candice works for Prestige Financial, Larry...
NBA Utah Jazz Tickets (4) for Preseason game vs. Portland Trailblazers available tomorrow night!
Four NBA Utah Jazz tickets for the preseason game tomorrow night, Monday, October 12th, donated by Gina Szajnuk and Justin Zanik. You will sit in our season ticket...
UTAH RARE DISEASE DAY 2016 is February 27th & February 29th. Planning has started! Join UtahRare.org
UTAH RARE DISEASE DAY 2016 is coming soon! February 27th & 29th!! Please share and “Like” the Utah Rare Facebook Page to find out more information about our upcoming events!...
Please help the RARE COMMUNITY by Asking Senator Hatch to Lead the Formation of a Rare Disease Caucus
Please use this LINK: Ask Senator Hatch to Lead the Formation of a Rare Disease Caucus Link: Senator Hatch’s website for more information about the Senator Dear Senator...