Zane Maximus Lewis Memorial Page
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02/11/2020
09/06/2020
Today is International Batten Awareness Day! Throughout the day we will be posting Batten facts. help us spread awareness by sharing them on your page!
24/01/2020
BDSRA is excited to announce that we have received a grant to assist families to attend Rare Disease Week in Washington DC (Feb 25-28).
Preference will be given to families who have not previously attended and those that did not receive the RDLA scholarship. We will be able to assist with travel and/or hotel stays, up to $1,000 per family.
To apply for this travel grant please click this link to complete the application https://tinyurl.com/sduahhr
Applications are due Thursday, January 30th, and you will be notified by Monday, February 3rd.
If you have any questions, please contact Tracy Kirby at [email protected] or 614. 973.6013
To read more about Rare Disease Week, and register to attend, please visit https://rareadvocates.org/registration-now-open-for-rare-disease-week-on-capitol-hill-2020/
Zane would be 16 today if not for having Batten Disease. Please visit bdsra.org to learn more about the devastating disease that kills children! If you'd live to give to help out families and research by donating that would be terrific as well. In the Spirit of Zane, and what he meant to his family and our community we will make a donation in his honor. - Trent Lewis
20/11/2019
23 Months Documentary on Batten Disease 23 Months is the story of our son Zane, who passed away at 23 months from Batten Disease in 2005. We follow 2 other families, the Smiths from Canada and the ...