I may make people upset with this post, but I wanted to share thoughts I’ve had all year that were made clear at a conference I attended this week about … Continue reading When the Love of Money Undermines Health
Category: Rare Disease
It’s Newborn Screening Awareness Month
September is both Newborn Screening Awareness Month and Leukodystrophy Awareness Month. I had the privilege of writing two guest posts this year, instead of using my own blog and social media accounts to help reach a new audience.
Each Chapter Shapes the Next
It was an honor to speak to the new class of graduate students in the Speech-Language Pathology Program at Lebanon Valley College today. This is the first time I have … Continue reading Each Chapter Shapes the Next
Remarks to the Forward Party National Women’s Committee
Years ago, I discovered the Forward Party and knew it was the place I most belonged. Tonight, I had the privilege of being featured as a speaker for the Forward … Continue reading Remarks to the Forward Party National Women’s Committee
Necessary but Unwanted Conversations
It’s been a heavy few days in our home. For months now, off and on, Isaiah has been asking to talk to baby Tori. To call her. To see her. … Continue reading Necessary but Unwanted Conversations
Tori’s ELEVENTH Birthday (and how you can help make a difference)
Today is Tori’s ELEVENTH birthday! It goes without saying that we wish she were here with us. Yet, in her absence, we continue to do what we can to support … Continue reading Tori’s ELEVENTH Birthday (and how you can help make a difference)
Congressional Briefing: The Price of Inaction
Today, I had the honor of presenting to the Congressional Rare Disease Caucus along with incredible fellow advocates and experts. The rare disease community has faced considerable setbacks in the … Continue reading Congressional Briefing: The Price of Inaction
On Medicaid and Disabilities (and Human Value)
Life for people with disabilities is often difficult, and it doesn’t have to be this way. America chooses to keep it this way. While I cannot speak from personal experience … Continue reading On Medicaid and Disabilities (and Human Value)
Advocacy Work is Not for the Faint of Heart
I’ve been doing a lot of writing lately because it is therapeutic during a time of such chaos in our country and in the Rare Disease space. We have experienced … Continue reading Advocacy Work is Not for the Faint of Heart
Op-Ed: Insurers Are Increasing Disparities in Rare Disease
(This is an op-ed that I am hoping will be published in a newspaper soon, but it feels too important to continue to wait so I wanted to publish it … Continue reading Op-Ed: Insurers Are Increasing Disparities in Rare Disease
Even So, Joy 