Diana Rodriguez

Day 17: Posting this video everyday until @DrMakaryFDA reviews #ataluren using #realworldevidence This is what 9 years on #ataluren looks like, this is not the natural history for a 13 yr old with #duchenne @SecKennedy @SenRonJohnson @SenRickScott @POTUS #raredisease

Day 16: Posting this video everyday until @DrMakaryFDA reviews #ataluren using #realworldevidence This is what 9 years on #ataluren looks like, this is not the natural history for a 13 yr old with #duchenne @SecKennedy @SenRonJohnson @SenRickScott @POTUS #raredisease

Day 15: Posting this video everyday until @DrMakaryFDA reviews #ataluren using #realworldevidence This is what 9 years on #ataluren looks like, this is not the natural history for a 13 yr old with #duchenne @SecKennedy @SenRonJohnson @SenRickScott @POTUS #raredisease

Day 14: Posting this video everyday until @DrMakaryFDA reviews #ataluren using #realworldevidence This is what 9 years on #ataluren looks like, this is not the natural history for a 13 yr old with #duchenne @SecKennedy @SenRonJohnson @SenRickScott @POTUS #raredisease

Day 13: Posting this video everyday until @DrMakaryFDA reviews #ataluren using #realworldevidence This is what 9 years on #ataluren looks like, this is not the natural history for a 13 yr old with #duchenne @SecKennedy @SenRonJohnson @SenRickScott @POTUS #raredisease

Day 12: Posting this video everyday until @DrMakaryFDA reviews #ataluren using #realworldevidence This is what 9 years on #ataluren looks like, this is not the natural history for a 13 yr old with #duchenne @SecKennedy @SenRonJohnson @SenRickScott @POTUS #raredisease

Day 11: Posting this video everyday until @DrMakaryFDA reviews #ataluren using #realworldevidence This is what 9 years on #ataluren looks like, this is not the natural history for a 13 yr old with #duchenne @SecKennedy @SenRonJohnson @SenRickScott @POTUS #raredisease

Day 10: Posting this video everyday until @DrMakaryFDA reviews #ataluren using #realworldevidence This is what 9 years on #ataluren looks like, this is not the natural history for a 13 yr old with #duchenne @SecKennedy @SenRonJohnson @SenRickScott @POTUS #raredisease

Day 9: Posting this video everyday until @DrMakaryFDA reviews #ataluren using #realworldevidence This is what 9 years on #ataluren looks like, this is not the natural history for a 13 yr old with #duchenne @SecKennedy @SenRonJohnson @SenRickScott @POTUS #raredisease

Day 8: Posting this video everyday until @DrMakaryFDA reviews #ataluren using #realworldevidence This is what 9 years on #ataluren looks like, this is not the natural history for a 13 yr old with #duchenne @SecKennedy @SenRonJohnson @SenRickScott @POTUS #raredisease

Rare disease advocacy tip that nobody tells you: Don't argue emotion vs. the FDA. Argue their own words back at them. Every designation they granted, every pathway they agreed to, every meeting minute they signed is a receipt. The FDA generates its own paper trail. Your job is to make sure people see it. #RareDisease #PatientAdvocacy

Day 7: Posting this video everyday until @DrMakaryFDA reviews #ataluren using #realworldevidence This is what 9 years on #ataluren looks like, this is not the natural history for a 13 yr old with #duchenne @SecKennedy @SenRonJohnson @SenRickScott @POTUS #raredisease

Posting this video everyday until @DrMakaryFDA reviews #ataluren using #realworldevidence This is what 9 years on #ataluren looks like, this is not the natural history for a 13 yr old with #duchenne @SecKennedy @SenRonJohnson @SenRickScott @POTUS #raredisease

Posting everyday until @DrMakaryFDA reviews #Ataluren using #realworldevidence for the treatment of #Duchenne. Ataluren is SAFE, increasing quality of life & lifespan & needs to be commercially available. @SecKennedy @POTUS @SenRonJohnson @SenRickScott #raredisease

Posting a photo of my 10 year old son w/ #Duchenne everyday until @DrMakaryFDA reviews #ataluren using #realworldevidence. Ataluren is SAFE, increasing quality of life & lifespan, & needs to be commercially available. @SecKennedy @POTUS @SenRonJohnson @SenRickScott #raredisease

In 2017 my son testified at #Ataluren FDA Adcom. 20 years on nthis drug. @SenRonJohnson thank you for investigation @POTUS @DrMakaryFDA @SecKennedy Review the full file with STRIDE data. Benefit seen! #raredisease #Ataluren #realworldevidence

Posting everyday until @DrMakaryFDA reviews #ataluren using #realworldevidence #duchenne @SecKennedy @SenRonJohnson @SenRickScott @POTUS #raredisease Jon is 32 and can create hand crafted pencil sketches. Ataluren is safe and beneficial.

Day 6: Posting this video everyday until @DrMakaryFDA reviews #ataluren using #realworldevidence This is what 9 years on #ataluren looks like, this is not the natural history for a 13 yr old with #duchenne @SecKennedy @SenRonJohnson @SenRickScott @POTUS #raredisease

Posting this video everyday until @DrMakaryFDA reviews #ataluren using #realworldevidence This is what 9 years on #ataluren looks like, this is not the natural history for a 13 yr old with #duchenne @SecKennedy @SenRonJohnson @SenRickScott @POTUS #raredisease

Day 5: Posting this video everyday until @DrMakaryFDA reviews #ataluren using #realworldevidence This is what 9 years on #ataluren looks like, this is not the natural history for a 13 yr old with #duchenne @SecKennedy @SenRonJohnson @SenRickScott @POTUS #raredisease