- Following 85
- Followers 32.5K
- Engagement 39.41%
- Avg likes 14.9K
- Avg comments 347
About Olivia + Family
Olivia + Family (@saving_liv) is a Personal blog creator on Instagram, also filed under Travel. The account has 32,452 followers and 402 published posts. Recent posts average 14,892 likes and 347 comments, an engagement rate of 39.41%.
With 32.5K followers, Olivia + Family is a micro creator by the common 10,000 to 100,000 definition. Set against 85 accounts followed, the audience works out to about 382 followers per account Olivia + Family follows. Olivia + Family uses an Instagram professional account. Flinque files Olivia + Family under Personal blog, with Travel as a secondary category.
The Instagram bio for Olivia + Family runs to 19 words across 2 lines. Emoji sit alongside the words. The latest activity Flinque has on record for Olivia + Family dates from December 2022.
Story Highlights
Unlocking shows the title and cover image of every story highlight this creator keeps pinned to the profile.
402 Posts
Of the 10 most recent posts shown for Olivia + Family, 5 are single images, 4 are videos and 1 is a carousel. No single format accounts for most of them. 402 published posts give Olivia + Family a moderate archive on Instagram. Against the audience, that is roughly 81 followers for each post published. Olivia + Family also keeps 2 story highlights on the profile. All 10 carry captions, averaging 107 words each. The captions are written mainly in English. Words that recur across them include sanfilippo, sanfilipposyndrome, been, well and sheâs. The captions tag #sanfilipposyndrome, #sanfilippo, #savingliv, #genetics and #fyp.
Two clinical trials for Sanfilippo Type B are coming to the US! This has been a LONG time coming, and I am so incredibly proud of all the hard work and dedication the Sanfilippo Community has done, for this to happen.
Spruce BioSciences and JCR Pharmaceuticals have both recently posted their clinical trial information on clinicaltrials.gov. Both are looking to start likely this winter. Site locations are on the East Coast and West Coast.
They are both enzyme replacement trials, so a weekly infusion into the brain (Spruce) or via a peripheral IV (JCR). Spruce is restarting a previous trial that ran for 5 + years several years ago, that did very well. JCR started their trial in Japan in 2024 which is also doing well.
Theyâve both proven safety, as well as some efficacy, but now they need to focus on proving how efficacious these treatments can be, especially when started early in life.
Both trials have a maximum age of 5, and Liv is 6.
While this news would have destroyed me a few years ago, I am at different place in this journey. One of acceptance of her diagnosis, and the desire to keep Liv and our family as comfortable as possible, in our routines. Liv has regressed considerably, and the brain damage caused by Sanfilippo is not reversed with this treatment, only slowed down. Had the age limit been higher, this would have still been an incredibly hard decision on whether or not to pursue a trial. The age cut off made the decision for us.
There may be an opportunity for an expanded access, or a different drug therapy option, in the future. We will certainly update you when we know more, but at this time we will continue to focus on keeping Liv smiling, and cherishing the time she and brother Liam have together. We are so happy for the 26 kids (14 kids for Spruce, 12 for JCR, spanning across several countries) and their families. We assume there are more than 26 kids that will be applying, and our hearts are with them all.
Thank you for your continued love and support of Liv and our family!
Love,
Erin, Tyler, Liv & Liam
The last two summers Liv has regressed considerably. Itâs not unexpected, but it was hard to watch. School is a true testament that even though we have no formal educational goals for Liv, engagement, movement and being around others is helping her. After school started this year, Liv was more engaged with her toys at home, she made better eye contact, and she just seemed happier.
Her peers love her, and I hear stories often of the impact sheâs making on young minds: inclusion, thoughtfulness, compassion, and empathy.
If youâve been a part of Livâs day at school, thank you đ
#sanfilippo
#Sanfilipposyndrome #sanfilippo #fyp #genetics #terminal
She had an extremely large goose egg and cut immediately. We did our best to apply ice and settle her but it was chaotic and traumatic. She recovered after an hour, and seemed unfazed and her normal self last night, thank goodness. We are back home today, taking it easy.
She has been falling a lot more, and it hurts our hearts. We try to be by her side often, but itâs just not possible to walk alongside her all the time. She has been getting these extreme bouts of hyperactivity, almost like âants in her pantsâ excitement. And she quickly flies around the room. Sheâs always been clumsy, but itâs definitely worsened in the past year, as her mobility declines.
Helmet on when we cannot be by her side? I hate taking away her mobility, and keeping her in a chair, or tiny room. We already put a barrier so she cannot go on the stairs without us.
I hate what Sanfilippo Syndrome has taken from her, so much.
#sanfilipposyndrome #sanfilippo
Traveling throws off our routine, but allows us to make memories that truly last a lifetime. Liv started out very tired on this trip, and is quite tired again this morning.
Sheâs had lots of waves of hyperactivity which consist of high pitched squeals and running around without stop. She requires constant supervision as she likes to try to escape, or grabs things she shouldnât have. She has no concept of water safety. The safest place outside has been hanging out in our docked pontoon, which she cannot get out of.
Uncle Jeff (my brother), is by far the person that makes Liv blush and grin from ear to ear, like she is in this photo.
We love her beyond measure.
#sanfilippo #sanfilipposyndrome
#SavingLiv
Olivia + Family's engagement
Olivia + Family's engagement rate on Instagram is 39.41%, over 6%, more than 6 likes and comments per 100 followers. On a typical post that comes to about 1 like or comment for every 3 followers. An average post collects 14,892 likes and 347 comments, close to 43 likes for each comment.
Engagement rate
39.41%
- Avg likes
- 14.9K
- Avg comments
- 347
- Interactions : followers
- 1 : 3
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Frequently asked questions
These answers about Olivia + Family are generated from the Instagram profile data Flinque holds for the account.
Who is Olivia + Family?
Olivia + Family (@saving_liv) is a Personal blog creator on Instagram, also filed under Travel. Olivia + Family uses an Instagram professional account. The Instagram bio for Olivia + Family runs to 19 words across 2 lines.
How many followers does Olivia + Family have?
Olivia + Family has 32,452 followers on Instagram (32.5K). Set against 85 accounts followed, the audience works out to about 382 followers per account Olivia + Family follows. 402 published posts give Olivia + Family a moderate archive on Instagram.
What is Olivia + Family's engagement rate?
Olivia + Family's engagement rate on Instagram is 39.41%, over 6%, more than 6 likes and comments per 100 followers. On a typical post that comes to about 1 like or comment for every 3 followers. An average post collects 14,892 likes and 347 comments, close to 43 likes for each comment.
What does Olivia + Family post about on Instagram?
Flinque files Olivia + Family under Personal blog, with Travel as a secondary category. Of the 10 most recent posts shown for Olivia + Family, 5 are single images, 4 are videos and 1 is a carousel. The 10 recent Instagram captions Flinque holds for Olivia + Family repeatedly use the words sanfilippo, sanfilipposyndrome, been, well and sheâs. Olivia + Family's captions carry hashtags such as #sanfilipposyndrome, #sanfilippo and #savingliv. Olivia + Family writes those captions mainly in English. Olivia + Family keeps 2 story highlights, which open with a free Flinque account.
How do I contact Olivia + Family for a collaboration?
Olivia + Family's contact details are not published on Flinque's public profile. The Instagram bio links to 1 external site, and a free Flinque account opens that link. Brands with a free Flinque account can shortlist Olivia + Family and use Flinque's outreach tools wherever a contact route is on file.
Links
Olivia + Family's own Instagram profile is the one outbound link Flinque publishes for the account, and the bio link opens after signing up.
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