Advocates

We hope our doors close one day due to finding a cure

Douglas Lowell, Find A Cure Panel I'm excited to be speaking today with Roberta Smith, president of Alagille Syndrome Alliance (ALGSA). Roberta, welcome.   Roberta Smith, president of Alagille Syndrome Alliance (ALGSA) Thank you so much. I'm always eager to spread awareness about Alagille Syndrome and this is a great…
Advocates

It’s like my sharing became a portal and opening for other people to share their stories

Douglas Lowell – Find a Cure Panel - Conversations I am here with eczema advocate, Ashley Lora. Ashley, thanks for joining Conversations today.   Ashley Lora Thanks for having me, Doug!   Douglas Lowell – Find a Cure Panel - Conversations Many people know of eczema. It's very common. But…
Patients

I am using the essential oils in combination with the medicine

Conversations: Elisa, thanks for talking to Conversations today. You have a very interesting and diverse story of conditions and diseases. Can you lead us through some summary of what you've been battling over the years?   Elisa Denaburg: Yes, the main issue was my thyroid. I had a misdiagnosis for…
Researchers

A core philosophy for Find A Cure Panel is it’s “all good all the time.”

Conversations: I am here today to talk to Doug Lowell, the president of Find A Cure Panel about Find A Cure Panel. So, yes, I’m interviewing myself! I’m doing this because so many people ask me about Find A Cure Panel and I wanted to create some reference points for…
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Latest Interviews

Patients

When I was first diagnosed with Glanzmann Thrombasthenia, my parents were told there were less than 200 cases in the world.

Conversations: Aidana, hi. Thanks for speaking with CONVERSATIONS today.  Tell us about Glanzmann Thrombasthenia (GT))?  What type of disease is this?  How old were you when you were diagnosed? Aidana: Hello! Glanzmann Thrombasthenia (GT) is a rare blood disorder. The platelet count in normal, but the platelets don't function properly,…
Douglas Lowell
June 26, 2019
Practioners

Many patients are often prematurely discharged from inpatient units and inevitably destabilize or are released from jails without proper treatment.

Conversations: Lynn, hi.  Thanks for speaking with CONVERSATIONS today.  Tell us about your practice? What you specialize in? What your niche is? Lynn Nanos: Hi, Conversations! Thank you for inviting me to interview with you! I’m a mobile emergency psychiatric social worker in Massachusetts and I've been doing this for…
Douglas Lowell
June 14, 2019
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Advocates

I decided to be the change that I wanted to see

Conversations: Mapillar, thanks for speaking to CONVERSATIONS today. Now, you're both a caregiver and advocate for sickle cell disease (SCD)?   Mapillar Dahn / MTS Sickle Cell Foundation: You're so very welcome. It's my pleasure. I am the mother of three beautiful daughters who all suffer from sickle cell disease.…
Douglas Lowell
May 17, 2019
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Advocates

We fight on each day in their honor

Conversations: Ashley, hi. Thanks for speaking with CONVERSATIONS today. Take me back to the beginning. How did you get involved with Wisconsin Ovarian Cancer Alliance which is known as WOCA?   Ashley Wagner of WOCA: Thank you for having me! I got involved with WOCA roughly 6 years ago. A…
Douglas Lowell
May 17, 2019
Patients

The energy you present introduces you

Conversations: Ivy, hi. Thanks for talking to CONVERSATIONS today. Tell us what ITP is as likely few people have heard of it or know much about it.   Ivy Dash: ITP stands for Immune Thrombocytopenic Purpura. In essence, it's that your body is destroying your platelets. Platelets are used for…
Douglas Lowell
May 15, 2019