Being rare is, by definition, a lonely and hopeless thing. Loving and caring for someone with a rare condition can sometimes feel even more lonely and hopeless. You spend most of your free time thinking how can I help them or influence the health care industry to find a cure for the rare condition my father, mother, child, brother, sister, husband or wife have?

Our guest today is a visionary and inspiration for anyone who has had that lonely hopeless feeling.  Sanath Kumar Ramesh is the father of a two-year-old boy who is one of only 9 kids worldwide with an ultra-rare genetic disease. It is hard to find conditions that are more unique.

However, Sanath and his wife have found an antidote. Not to the condition for their son, but for the loneliness and hopelessness. And it comes down to two simple things. One – Sharing their story. Sanath has chronicled the good, the bad, and the ugly truths about the journey he is taking with his family on his podcast “Raising Rare.” Two – Crowdsourcing for a cure. Sanath has applied his software wizardry to the creation of the Open Treatments Foundation, an open-source software platform to enable treatments to millions of patients worldwide.

By unapologetically sharing his story, Sanath is giving others the inspiration to do the same. By sharing these stories and giving people hope are enough to change our industry. And it is change we need. 

Please subscribe and keep listening to Rare Voices!
Listen now: https://www.optimecare.com/rare-voices/category/podcast/

More About Sanath Kumar Ramesh
Connect:
Sanath’s Linkedin: https://www.linkedin.com/in/sanathkr/ 
OpenTreatments Foundation Linkedin: https://www.linkedin.com/company/opentreatments/

Resources:
Raising Rare Podcast: https://www.raisingrare.fm/
OpenTreatments Foundation: https://www.opentreatments.org/

Sanath Kumar Ramesh Bio
Sanath is a bold and visionary software leader, open source pioneer and a rare disease drug developer. In his career, he has built and launched several successful open source software products. He is now using open source software to enable treatments for 400 million patients worldwide affected with rare genetic diseases through his non-profit organization, OpenTreatments Foundation. He is building the world’s first software platform to decentralize drug development and empower anyone in the world to create a treatment for a genetic disease. He is also the father of a 2 year old boy who is one of 9 kids worldwide with an ultra-rare genetic disease called SSMD (curegpx4.org)

Music Credits:
Westpoint Instrumental by  Sun Shapes

S2E5: Sanath Kumar Ramesh, Founder of OpenTreatments Foundation

The families of people with rare conditions often feel like they have to live two lives.

For the person they love and care about, their son or daughter or their parent, they want to put on a tough and sunny face. When they take their loved one out in public, they want everyone to see just how strong the family is and how everyone should be grateful. They grit and smile through the treatment side-effects, through awkward glances, through long nights.

Then there is the other life. The one where they just break down. The one that they try to keep hidden from the world and maybe even that person they care about. They keep it hidden because they may come across as weak or ungrateful or even self-centered. But, of course, they are humans. And they are bound to feel the weight of despair, the confusion of unpredictability, and the odd joy of loving someone through tough times.

Unless you have had to live this dual life, everything that I just said can still just remain a theory – something that you can turn off now and go about your day. But for the people with rare conditions and the families around them, this is a reality – day-in and day-out.

Effie Parks is someone who has lived that dual life and come out the other side. And she is someone who has merged those two lives and offered an alternative for caregivers and advocates.

She is the proud mother of Ford, her son born with an extremely rare condition. Her desire to create the best life for Ford drove her into advocacy and to create “Once Upon a Gene,” an inspiring podcast that reveals the stories of the people living dealing with that dual life.

On this episode, we both get real and swap stories about the despair of diagnosis day, the hopes we have for our families, and our challenge to a health care industry still blind to the nuances of life with rare disease.

It is an unflinching look at real life, and I know that you will enjoy it.

Please subscribe and keep listening to Rare Voices!

Effie Parks Bio
Effie Parks was born in the magical land of Montana, where she was raised with her 12 loving siblings.  After moving to Washington and marrying her husband, they were blessed with the birth of their son, Ford Canon Parks.  When she learned that Ford had been born with an extremely rare genetic condition – CTNNB1 syndrome – she dove into the world of advocacy.  Now, she is the host of her own podcast, Once Upon a Gene, where she speaks to others about their journey through life with rare disease.

Music Credits:

Westpoint Instrumental by  Sun Shapes

S2E6: Effie Parks, Podcast Host, Once Upon a Gene, Mother to a Rare Disease Warrior

21- year-old Doug Lindsay seemingly had his whole life in front of him. However, in college, that future was turned upside down, leaving him bedridden and homebound dealing with his autonomic-adrenal condition.

After countless treatments and strategizing with the best in the medical field, Doug sought to have a surgery done that would blur ethical lines in the medical field, but would allow him to recover from his rare ailment.

Now, Doug continues to improve medicine. Having worked with 35 senior faculty at 28 institutions, developing new uses for 5 existing prescription drugs, winning a national first court case protecting patients’ rights, and developing the concept for the two successful, innovative adrenal surgeries used to treat his case, Doug continues to be an advocate for patient care.

On this episode, Doug tells his story, highlighting the highs and lows of the journey and how he looks to help others facing rare medical challenges.

Please subscribe and keep listening to Rare Voices!

Music Credits:

Westpoint Instrumental by  Sun Shapes

S2E7 - Doug Lindsay, Rare Disease Innovator and Personal Medical Consultant

On this episode, we hear from a variety of voices in the front lines of rare patient-first care. With pandemic uncertainty looming, there are a lot of questions that are constantly emerging for people with rare conditions and their families. How can potential challenges be seen as opportunities for improved quality of care? What are the creative ways that pharma companies are creating awareness for rare conditions?

Be inspired and be challenged to rethink your 2022 strategic plans. I can tell you that this one really inspired me!

Here are the bios for the awesome Optime Care team that we had on this episode:

Dr. Brandon Salke, general manager

Dr. Brandon Salke serves as the pharmacist-in-charge and General Manager at Optime Care in Earth City, MO. He previously served as a team pharmacist for Dohmen Life Science Services, where he helped launch several new care programs. He is specialized in specialty pharmaceuticals, particularly ultra-orphan, orphan, and rare disease. Dr. Salke has been involved in all aspects of operations (planning, process integration, project management, etc.) for pharmaceutical manufacturers. This includes clinical trials to commercialization and assisting in commercial launches (and relaunch) of specialty pharmaceuticals.

Dr. Salke completed his PharmD from St. Louis College of Pharmacy (StLCOP) in St. Louis, MO and holds the Certified Specialty Pharmacist (CSP) credential from the National Association of Specialty Pharmacy. He is currently an active member of the National Association of Specialty Pharmacy (NASP), American College of Clinical Pharmacy (ACCP), American Society of Hospital Pharmacists (ASHP), and the Missouri Pharmacists Association (MPA). 

Dr. Salke currently holds a pharmacist license in 20 states and the US Territory, Guam, allowing him a deep understanding of state and federal pharmacy.

Stephanie Wasilewski, vice president

Stephanie Wasilewski is a VP, Care Director at Optime Care. Stephanie has been a pharmacist for over 15 years and is passionate about providing best-in-class patient care. She started her journey in the retail pharmacy setting, eventually managing a pharmacy for 5 years. Her career path led her to the mail order setting and then she was called to Optime Care where she now manages a program for patients with Hereditary Angioedema (HAE).

Jessy Broughton, care director

Jessy Broughton is a Care Director at Optime Care.  She has been at Optime Care for 2 years and loves the chance to help make a difference in the lives of our patients. Prior to Optime Care, Jessy worked in Care Coordination at St. Luke’s Hospital.  There she lead a medication adherence program and was instrumental in receiving a 5 star rating for Medicare measures. She also has a background in retail pharmacy, as well as attended pharmacy school.  Jessy works hard to make sure her team provides the best experiences to our patients.

Hannah Morgan, pharmacist

Hannah is a team pharmacist at Optime Care and has been with the company since 2018. She has worked as a pharmacist for the last 8 years and has a passion for helping others. After years in community pharmacy, Hannah found her way to Optime Care where she takes pride in her job as pharmacist. Hannah is committed to providing quality patient care and is enthusiastic about applying her insight, creativity to help make a difference in the lives of others.

The Patient-First 2022 Outlook for Rare Disease

Rare Voices reveals the wisest path to a fulfilled life for patients with rare and orphan disorders. Brought to you by the people at Optime Care, a pioneering specialty pharmacy. In each episode, host Donovan Quill, cofounder of Optime Care, uncovers insights from patient advocates, pharmaceutical innovators, leaders in insurance, physicians, and caregivers. Prepare to provoke your mind and fuel your drive to serve rare and orphan patient populations.

S2E5: Sanath Kumar Ramesh, Founder of OpenTreatments Foundation

Rare Voices

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