Donating to the Rare Sisters Batten Foundation allows us to give back to the Batten community through medical research and to families affected by this terrible disease. The Rare Sisters Batten Foundation was founded and inspired by the community that has come together to support the Fries family, and now aims to give back to others that may also need some extra support along their Batten Journey.&nbsp; Rare Sisters is working to make getting needed vans to Batten families easier and seamless. We are fortunate to have the ability to pre purchase vehicles and be able to ship them to families in need as soon as their grant is approved. Your donation as a Monthly Miracle Maker&nbsp;makes this possible. This alleviates much stress of searching for a vehicle on top of caring for an affected child.&nbsp;

Hello <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 so much for your donation to the Rare Sisters Batten Foundation. Your generous gift allows us to support Batten families with specialized medical care and profoundly impacts families in financial predicaments because of this diagnosis.&nbsp; With regards to specialized medical care, your contribution allows Rare Sisters to proudly support the Batten &amp; Neurodegenerative Clinic at Children&#39;s Hospital Colorado. This clinic offers a collaborative approach to rare neurodegenerative diseases. Patients are able to come and visit with 9-12 different providers over the course of several hours, then the providers can collaborate with each other in real-time to come up with a complete plan of care for the patient. This type of personalized medicine is critical for these patients. Your support allows us to continue to fund the clinic and provide this care for patients with rare diagnoses from all over the country who come to visit this specialized clinic.&nbsp; The most exciting work of the foundation is when we get to distribute large amounts of money to families who have applied for grants. When we gather as a board to go over the applications we have received, it is humbling to see the need these families have. The majority of families are in desperate need of transportation. As Batten children regress and become less mobile, it becomes more difficult to transport them to appointments, school, and therapy. Some of the families we have helped did not even have a car and had to pay for a cab to pick up their child&#39;s &ldquo;free&rdquo; prescription. Thanks to the generosity of our donors, we have been able to grant over $650,000 to families in need of major purchases. The need is great, and with your support, we can truly be a miracle for these families and change the quality of life for Batten children and their families with your support.&nbsp; Thank you for your continued support, your generosity, and your kindness. You are the MIRACLE!&nbsp; Gratefully,&nbsp; Beth Fries&nbsp;President, Rare Sisters Batten Foundation foundation@raresisters.org

Hello First name,
 
 Thank you from the bottom of our hearts for registering to fundraise for our cause. Your efforts will make a significant impact, and we are excited to have you as part of our fundraising team. 👏
 
 💡 Here are some tips for sharing your campaign:
 <ol>
 <li>Personalize Your Story: Share why this cause is important to you. Personal stories resonate more with potential donors.</li>
 <li>Use Social Media: Post about your campaign on Facebook, Instagram, X, and LinkedIn. Include the campaign link and a compelling image or video.</li>
 <li>Email Your Network: Send a personal email to friends, family, and colleagues explaining why you are fundraising and how they can help.</li>
 <li>Regular Updates: Keep your supporters informed with updates on your progress and any milestones you reach. This keeps them engaged and more likely to share your campaign.</li>
 </ol>
 Beth Fries foundation@raresisters.org

Donating to the Rare Sisters Batten Foundation allows us to give back to the Batten community through medical research and to families affected by this terrible disease. The Rare Sisters Batten Foundation was founded and inspired by the community that has come together to support the Fries family, and now aims to give back to others that may also need some extra support along their Batten Journey.  Rare Sisters is working to make getting needed vans to Batten families easier and seamless. We are fortunate to have the ability to pre purchase vehicles and be able to ship them to families in need as soon as their grant is approved. Your donation as a Monthly Miracle Maker makes this possible. This alleviates much stress of searching for a vehicle on top of caring for an affected child.

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Rare Sisters Batten Foundation Inc

### Context Profile for Rare Sisters Batten Foundation Inc

#### 1. Organization Mission & Cause
The Rare Sisters Batten Foundation Inc is dedicated to raising awareness and supporting individuals affected by Batten disease, a rare neurological disorder. Their mission focuses on providing resources, education, and community support to families impacted by this condition. The foundation aims to foster understanding and advocacy for those living with Batten disease, emphasizing the importance of research and funding for potential treatments.

#### 2. Type of Activities
- **Fundraising Campaigns:** The foundation runs various fundraising initiatives, including the "Rare Sisters Boutique," where purchases directly support their mission.
- **Community Programs:** They engage in community outreach to raise awareness about Batten disease and support affected families.
- **Awareness Events:** The organization likely participates in or hosts events aimed at educating the public about Batten disease.

#### 3. Tone of Voice
The tone of voice used by the Rare Sisters Batten Foundation is friendly, supportive, and encouraging. Their communications are designed to be approachable and relatable, aiming to connect with individuals and families affected by Batten disease. The language is often informal yet respectful, creating an inviting atmosphere for engagement.

#### 4. Emoji Usage
The organization utilizes emojis in their communications, particularly in promotional materials and social media posts. For example, the use of the shopping bag emoji (🛍️) in the "Rare Sisters Boutique" campaign adds a casual and friendly touch to their messaging. Emoji usage appears to be moderate, enhancing the tone without overwhelming the content.

#### 5. Key Facts
- **Founding Info:** Specific founding details were not available on the website, but the organization is focused on a niche cause related to Batten disease.
- **Scale:** The foundation operates on a small scale, with limited forms and email campaigns indicating a grassroots approach.
- **Impact Metrics:** While specific metrics were not detailed, the foundation emphasizes the direct impact of purchases on their mission, suggesting a focus on tangible outcomes.
- **Volunteer Info:** The website does not provide explicit volunteer information, but community involvement is likely encouraged given their mission.

#### 6. Writing Guidelines
- **Style:** Use a friendly and supportive tone, avoiding overly formal language. Aim for clarity and simplicity to ensure accessibility.
- **Engagement:** Incorporate calls to action that encourage participation in fundraising and awareness efforts.
- **Personalization:** Use recipient names where possible to create a more personalized experience.
- **Visual Elements:** Consider including emojis sparingly to maintain a light-hearted and approachable tone.
- **Content Structure:** Keep paragraphs short and easy to read, using bullet points or lists for clarity when appropriate.

This context profile serves as a foundational guide for generating personalized content that aligns with the Rare Sisters Batten Foundation's mission, values, and communication style.

Rare Sisters Batten Foundation Inc

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