Mother’s Day Ovarian Cancer 5K

• Post author:Trudy Horsting
• Post published:May 11, 2017
• Post category:Ovarian Cancer/Timely

The 2017 Suburban Chevrolet Ann Arbor Goddess 5K and Mile Fun Run will be held on Mother’s Day, this Sunday, May 14th. The race is not only to celebrate women,…

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You’ll Feel All the Feels for TSC Parenting Decisions

• Post author:Sabina Kennedy
• Post published:May 11, 2017
• Post category:Rare Disease/Tuberous Sclerosis Complex

Some people can manage tuberous sclerosis complex (TSC) with their doctors for years using a watch-and-wait approach until the last and best option—surgery—becomes necessity. By using the watch-and-wait method, a…

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Read It Now! What Two Words Empower DBA Parents?

• Post author:Sabina Kennedy
• Post published:May 11, 2017
• Post category:Diamond Blackfan Anemia

Did you ever hear about a pacu fish? Not me either. How about compression apparel? What’s that? Did you know sunglasses for dogs have been invented? Say what? There are…

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People with Tuberous Sclerosis Complex May Have New Hope

• Post author:Al Pendleton
• Post published:May 11, 2017
• Post category:Rare Disease/Tuberous Sclerosis Complex

Every year, actually every day, the FDA and similar organizations for other countries approve new medicines. Innumerable pharmaceutical companies work tirelessly for years to research, develop, test, distribute, and market…

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Big Brother Running 2,107 Miles in Support of SMA

• Post author:Nia
• Post published:May 11, 2017
• Post category:Rare Disease/Spinal Muscular Atrophy/Timely

Carl Rooney has seen everything SMA Support UK has done for his younger brother, Daniel. That's why he's running 2,107 miles. Carl is from an English town called St. Ives, and…

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If I Knew Then, What I Know Now

• Post author:Patient Worthy Contributor
• Post published:May 11, 2017
• Post category:Parkinson's Disease/Rare Disease

I was discussing with my sister’s husband a presentation on what to do when diagnosed with a chronic illness. I was going to present this to People with Parkinson’s (PwP),…

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Being a Caregiver to a MG Warrior

• Post author:Rebekah
• Post published:May 11, 2017
• Post category:Myasthenia Gravis/Rare Disease/Timely

At the Myasthenia Gravis Foundation of America’s annual conference this year, Kathryn Rodriguez (pictured above with her husband Alexis) led some incredible breakout sessions for the caregivers/loved ones of those…

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These Grandparents Swing with Shire to Ignite Inspiration for Hemophilia!

• Post author:Alisha Stone
• Post published:May 11, 2017
• Post category:Hemophilia A/Rare Disease

The Hemophilia Alliance of Maine recently co-sponsored a special event with Shire Pharmaceuticals for grandparents to join together for inspiration. The event was held on April 22nd in Maine. I…

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