RARE Together Watch Together Film Selections from The Disorder Channel: Sibling Experience

September 17, 2020

Grab some popcorn and join us for three engaging evenings on resilience, inspiration, dedication, hope and courage with short films and discussions curated in partnership with The Disorder Channel! Each night we will host patients and caregivers featured in each film to provide insight into their inspiring journeys, simulcast over global social networks, with live chat and interactions with key figures from the documentary short films.  Moderated by podcaster Effie Parks, this evening will feature the following films:

Me, My Sister and Blau directed by Felix Townsin & Cheryl-Lynn Townsin

Featuring: Felix Townsin & Cheryl-Lynn Townsin

In October 2019, Lexi Townsin lost her life to Blau syndrome (early onset sarcoidosis). Her wish was to find a cure, but despite all their efforts the Townsins ran out of time before a cure was found. Lexi’s 9 year old brother Felix is determined to carry out her wish so that others do not suffer like she did. This is a story of love, dedication and courage.

Unconditional: Raising a Glass Child with a PACS1 Sibling directed by Jon Dorflinger

This film introduces the Poague Zellinger family who are facing PACS1 syndrome which affects their five year old son Finn. The phrase glass child refers to a sibling who might be neglected or given less attention because their brother or sister has more intense or dramatic needs. This is not only due to rare disease but that’s a striking example.

Rare Disease in Children: Voices of the Siblings directed by Blyth Lord

Featuring: Blyth Lord and Kyla Marquardt

Three groups of siblings speak poignantly about what it is like to be the brother or sister of a child living with a rare, life-limiting disease. From COURAGEOUS PARENTS NETWORK, a nonprofit that empowers parents caring for children with serious illness, including the promotion of pediatric palliative care.

Perfect Brothers directed by Claire Banks

Harry was born with a facial disfigurement due to a condition called “Goldenhar syndrome”. He is one of the twins and this follows the story of the close bond with his brother Oliver. After many operations to improve Harry’s appearance, he still gets a lot of negative attention but ultimately, he is a happy child.

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