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Click here to read about Frankie Perrazzola’s quest for self-improvement and goal achievement in the midst of the chaos of a global pandemic.

What are some goals you’re currently working toward? Has the pandemic made you more or less motivated to achieve them?

Kendall Harvey says her dreams have changed as her Friedreich’s ataxia has progressed, but what hasn’t changed is her hope for a cure. Click here to read more from Kendall.

How has FA affected your dreams? Have you given up on them or adapted them as your FA has progressed?

Neurofilament light chain may be a biomarker of disease severity and response to treatment among people with FA, particularly younger ones. Read more here.

What do you think of this news?

Chondrial has merged with Zafgen and will start operating as Larimar Therapeutics, which will now be responsible for the clinical development of CTI-1601. Read more about the merger here.

What do you think of this news?

The Black Women’s Health Imperative has created a Rare Disease Diversity Coalition focused on reducing racial disparities in the rare disease community. Read more about it here.

What are some specific issues you hope this coaltion will address?

Kendall Harvey doesn’t like to have her walker included in photos taken of her. Click here to find out why.

Can you relate to Kendall’s story? How do you feel about having your walker or wheelchair in photos?

Data from a Belgian study has linked faster progression and loss of walking abilities to those whose FA symptoms began before age 8. Click here to learn more.

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Weeks into quarantine, Frankie Perazzola is learning how to fight off negative thoughts with healthy distractions. Click here to find out more.

How do you distract yourself from thinking negative thoughts?

With Mother’s Day just behind her, Kendall Harvey takes stock of all that her disease has brought to, and denied, her and her two children. Click here to read Kendall’s column.

Can you relate to Kendall’s story?

Sean Baumstark ponders life’s deepest lessons after learning of the tragic loss of a friend and co-worker recently. Read more from Sean here.

Can you relate to what Sean shares?

Hospitals are leaning into video games during the COVID-19 pandemic to entertain and connect children with rare and chronic conditions, including cystic fibrosis. Click here to read more.

What do you think of this news?

Click here to read about the expansion of newborn screening programs across the European Union.

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May is Friedreich’s Ataxia Awareness Month, and Frankie Perazzola has put together some information about how you can get involved by joining the Lend Us Some Muscle campaign. Click here to learn more.

What are you doing or planning to do to raise awareness about FA this month?

To mark FA Awareness Month, the Friedreich’s Ataxia Research Alliance is hosting a Research Flash Talk series with experts. Click here to find out how you can participate.

Which of these research flash talks interests you the most? What other topics are you interested in learning about?

PTC Therapeutics said pandemic will delay, by about 3 months, plans for a clinical trial in Friedreich’s ataxia patients of PTC743 and gene therapy work. Find out more here.

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The NIH-led research network hopes for 5,000 responses to its online survey of how people with rare diseases in the US are being affected by the pandemic. Click here to learn more about the survey and how you can participate in it.

How has the global pandemic affected you? What do you think the survey will reveal about the pandemic’s…[Read more]

Click here to read NORD’s call to action for rare disease patients on financial and legislative issues in the wake of the COVID-19 pandemic.

Which of these issues is most important to you and why?

Click here to read about two microRNAs that play a key role in the development of Friedreich’s ataxia and which may also represent promising treatment strategies.

What do you think of this news?

Click here to read about an announcement from FFF Enterprises and BioNews Services about a plan to bring next-generation solutions to the rare and chronic disease clinical trial process.

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Click here to read about a study showing that increased thickness of the heart’s left ventricle is common in FA patients and linked to genetic disease severity in adults.

What do you think of this news?