The Fight Farber Foundation

### Context Profile for The Fight Farber Foundation

1. **Organization Mission & Cause**:
   - **Mission**: The Fight Farber Foundation is dedicated to funding research for a cure for Farber Disease, an ultra-rare, degenerative disorder affecting fewer than 100 children worldwide. The foundation aims to develop targeted gene therapy to treat acid ceramidase deficiency and provide hope for affected children and their families.
   - **Cause**: The foundation was established in response to the personal story of Zayd, a child diagnosed with Farber Disease, highlighting the urgent need for research and treatment options for this life-limiting condition.

2. **Type of Activities**:
   - **Fundraising Campaigns**: The foundation is currently running a campaign to raise $1 million by April 2026 to fund a cure for Farber Disease.
   - **Community Engagement**: The organization shares personal stories and updates to connect with supporters and raise awareness about Farber Disease.
   - **Awareness Initiatives**: They focus on educating the public about the disease and the importance of research funding.

3. **Tone of Voice**:
   - The tone is **emotional**, **urgent**, and **hopeful**. The language used is personal and heartfelt, often sharing intimate stories that evoke empathy and inspire action. Phrases like "ultra-loved" and "resilience, healing, and hope" reflect a nurturing and supportive tone.

4. **Emoji Usage**:
   - The website does not prominently feature emojis in its content. Communications are primarily text-based, focusing on emotional storytelling rather than casual or playful expressions.

5. **Key Facts**:
   - **Founding Info**: The foundation was established in response to the diagnosis of Zayd, born in June 2024.
   - **Scale**: The organization has initiated multiple fundraising efforts, with a goal of raising $1 million.
   - **Impact Metrics**: The foundation aims to support the development of gene therapy for Farber Disease, which currently has no approved cure.
   - **Volunteer Info**: Specific volunteer opportunities or metrics were not detailed on the website.

6. **Writing Guidelines**:
   - **Style**: Use a narrative style that emphasizes personal stories and emotional connections. Incorporate elements of hope and urgency in the messaging.
   - **Language**: Use simple, clear, and heartfelt language. Avoid jargon and focus on the human impact of the disease.
   - **Call to Action**: Clearly articulate the need for donations and support, emphasizing the urgency and importance of funding research.
   - **Personal Touch**: Include personal anecdotes or stories to engage the audience emotionally and foster a sense of community and shared purpose.

This context profile serves as a guide for creating personalized and impactful content for The Fight Farber Foundation, ensuring alignment with their mission and communication style.

LXCL:Grants entry to the event, a light meal, and one drink ticket! Raffle tickets and additional drink tickets will be available for purchase at the event!

General Admission

LXCL:1 raffle ticket!

Raffle ticket

LXCL:Bundle of 3 raffle tickets!

Raffle tickets (3)

LXCL:Bundle of 10 raffle tickets!

Raffle tickets (10)

Drink ticket

Please donate at this link: <a data-fr-linked="true" fr-original-style="" href="https://www.zeffy.com/en-US/donation-form/help-fund-a-cure-for-farber-disease" id="isPasted" rel="noopener noreferrer" style="text-decoration-color: initial; user-select: auto; box-sizing: inherit;" target="_blank">https://www.zeffy.com/en-US/donation-form/help-fund-a-cure-for-farber-disease</a>&nbsp; Thank you! A big thank you to everyone who attended our first fundraiser!! It was a great success! ___________________________________________________________________________ Join us for our first fundraising event! We will have a silent auction, a raffle, food, drinks, music, and great company! Zayd has Farber Disease, an ultra-rare, degenerative, and life-limiting disorder caused by mutations in the ASAH1 gene, leading to a deficiency in the enzyme acid ceramidase. Farber causes progressive pain, joint stiffness, muscle weakness, inflammation, difficulty swallowing, and severe developmental delays. Farber Disease affects fewer than 100 children worldwide - so it&#39;s up to us to raise the money needed to bring a cure to reality.&nbsp; This fundraiser supports the urgent development of gene therapy to treat Farber Disease &mdash; to bring hope not only to Zayd but to every child affected by this devastating disorder. Every single one of them is ultra-loved. All contributions go to The Fight Farber Foundation (501(c)(3) status pending*) to fund clinical trials for targeted gene therapy.&nbsp; Thank you for supporting our mission! Zayd&#39;s adoring parents,&nbsp;Reem &amp; Emad * All tax receipts will be provided once tax exempt status is granted. Thank you for your patience!

Hi <span contenteditable="false" data-custom-variable="{{firstname}}" fr-original-class="fr-deletable styled-tag-chip" fr-original-style="" style="background-color: rgb(248, 248, 255); border: 1px solid rgb(191, 191, 255); border-radius: 4px; color: rgb(42, 42, 196); padding: 1px 8px; font-size: 11px; display: inline-block; margin: 0px; overflow-wrap: anywhere; user-select: none; box-sizing: inherit;">First name, Thank you for registering for our event and supporting our cause! Your contribution helps support our mission and means the world to our family! All proceeds from this event support the urgent development of a cure for Farber Disease &mdash; to bring hope not only to Zayd but to every child affected by this devastating disorder. If you would like to contribute further, share our event and GoFundMe (https://gofund.me/c50d692dc) with your family and friends! All contributions are tax deductible and go to SMA-PME Research Charity (501(c)(3)) to fund clinical trials for targeted gene therapy. Spinal Muscular Atrophy with Progressive Myoclonic Epilepsy (SMA-PME) is a sister disease to Farber, caused by mutations in the same gene, and the therapies being developed could benefit both, changing the lives of more children. All our gratitude,Zayd&#39;s adoring parents, Reem &amp; Emadeissareem@gmail.com

Please donate at this link: <a href="https://www.zeffy.com/en-US/donation-form/help-fund-a-cure-for-farber-disease" target="_blank">https://www.zeffy.com/en-US/donation-form/help-fund-a-cure-for-farber-disease</a>  Thank you! A big thank you to everyone who attended our first fundraiser!! It was a great success! ___________________________________________________________________________ Join us for our first fundraising event! We will have a silent auction, a raffle, food, drinks, music, and great company! Zayd has Farber Disease, an ultra-rare, degenerative, and life-limiting disorder caused by mutations in the ASAH1 gene, leading to a deficiency in the enzyme acid ceramidase. Farber causes progressive pain, joint stiffness, muscle weakness, inflammation, difficulty swallowing, and severe developmental delays. Farber Disease affects fewer than 100 children worldwide - so it's up to us to raise the money needed to bring a cure to reality.  This fundraiser supports the urgent development of gene therapy to treat Farber Disease — to bring hope not only to Zayd but to every child affected by this devastating disorder. Every single one of them is ultra-loved. All contributions go to The Fight Farber Foundation (501(c)(3) status pending*) to fund clinical trials for targeted gene therapy.  Thank you for supporting our mission! Zayd's adoring parents, Reem &amp; Emad * All tax receipts will be provided once tax exempt status is granted. Thank you for your patience!

The Fight Farber Foundation

Hope for Zayd: A fundraiser for the fight to cure Farber disease

10127 Morocco St #195

General Admission

$25

Raffle ticket

$5

Raffle tickets (3)

$10

Raffle tickets (10)

$30

Drink ticket

$5

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