Sisters Hope Foundation For Hereditary Diffuse Leukoencephalop

### Context Profile for Sisters Hope Foundation

1. **Organization Mission & Cause**:
   - The Sisters Hope Foundation is dedicated to supporting and empowering families affected by Hereditary Diffuse Leukoencephalopathy with Brain Stem Involvement (ALSP) and CSF1R-related diseases. Their mission focuses on:
     - Educating the public to raise awareness about these rare diseases.
     - Advocating for increased research and funding to enhance treatment options.
     - Connecting patients and families to foster community and support.
     - Providing financial assistance and resources to those in need.

2. **Type of Activities**:
   - The foundation engages in various activities including:
     - **Educational Campaigns**: Raising awareness about ALSP and CSF1R-related diseases.
     - **Advocacy**: Promoting research and funding initiatives.
     - **Community Building**: Connecting families and patients for mutual support.
     - **Fundraising Events**: Such as donation matching campaigns and other fundraising drives.

3. **Tone of Voice**:
   - The tone of the website and communications is **friendly, supportive, and encouraging**. The language is accessible and aims to inspire action, emphasizing community and collective effort. The use of direct calls to action (e.g., "Donate," "Share," "Volunteer") conveys urgency and importance.

4. **Emoji Usage**:
   - The website and communications do not prominently feature emojis. The tone remains professional and earnest, focusing on clarity and the gravity of the cause rather than casual or playful elements.

5. **Key Facts**:
   - **Founding Information**: Specific founding details were not available on the website.
   - **Scale**: The foundation has conducted 14 forms and 11 email campaigns, indicating a structured approach to outreach and engagement.
   - **Impact Metrics**: While specific metrics were not detailed, the foundation emphasizes community impact through education, advocacy, and support.
   - **Volunteer Information**: The foundation encourages volunteering as a means to contribute, although specific volunteer opportunities are not detailed on the website.

6. **Writing Guidelines**:
   - **Style**: Content should be clear, concise, and supportive. Use direct calls to action to encourage engagement.
   - **Language**: Maintain a friendly and encouraging tone, avoiding overly technical jargon unless necessary for clarity.
   - **Structure**: Use bullet points and lists for clarity, especially when outlining ways to help or the foundation's mission.
   - **Engagement**: Encourage sharing and community involvement, fostering a sense of belonging and urgency.

This context profile serves as a foundational guide for creating personalized and effective content for the Sisters Hope Foundation, ensuring alignment with their mission, tone, and audience engagement strategies.

EL-PFDD Informational Webinar Registration

<p data-pm-slice="1 3 []" fr-original-style="caret-color: rgb(0, 0, 0); color: rgb(0, 0, 0); font-style: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: auto; text-align: start; text-indent: 0px; text-transform: none; white-space: pre-wrap; widows: auto; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration: none;" id="isPasted" style="caret-color: rgb(0, 0, 0); color: rgb(0, 0, 0); font-style: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; text-align: start; text-indent: 0px; text-transform: none; white-space: pre-wrap; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration: none; margin: 0px; line-height: 1.5; box-sizing: inherit;">Sisters&#39; Hope Foundation will be hosting an externally-led patient focused drug development (EL-PFDD) informational webinar on Monday, April 28th, 2025 via Zoom. We encourage anyone attending the PFDD or considering attending the PFDD to watch this webinar.&nbsp;<p fr-original-style="caret-color: rgb(0, 0, 0); color: rgb(0, 0, 0); font-style: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: auto; text-align: start; text-indent: 0px; text-transform: none; white-space: pre-wrap; widows: auto; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration: none;" style="caret-color: rgb(0, 0, 0); color: rgb(0, 0, 0); font-style: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; text-align: start; text-indent: 0px; text-transform: none; white-space: pre-wrap; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration: none; margin: 0px; line-height: 1.5; box-sizing: inherit;">Topics covered will include:<ol data-rte-list="default" fr-original-style="caret-color: rgb(0, 0, 0); color: rgb(0, 0, 0); font-style: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: auto; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: auto; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration: none;" style="caret-color: rgb(0, 0, 0); color: rgb(0, 0, 0); font-style: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px; -webkit-text-stroke-width: 0px; text-decoration: none; box-sizing: inherit;"><li fr-original-style="" style="box-sizing: inherit;">Role of the FDA</li><li fr-original-style="" style="box-sizing: inherit;">Purpose of EL-PFDD</li><li fr-original-style="" style="box-sizing: inherit;">Details about ALSP specific EL-PFDD</li><li fr-original-style="" style="box-sizing: inherit;">Next Steps - Voice of the Patient</li><li fr-original-style="" style="box-sizing: inherit;">How You Can Participate</li><li fr-original-style="" style="box-sizing: inherit;">Registration Information</li></ol>This session will be prerecorded and available to view on our website if you are not able to attend the webinar on 4/28. The Zoom link for the webinar will be sent in your registration confirmation email. Please contact Erin Sullivan at <a fr-original-style="" href="mailto:info@sistershopefoundation.org" rel="noopener noreferrer" style="text-decoration-color: initial; -webkit-user-select: auto; box-sizing: inherit;" target="_blank">info@sistershopefoundation.org</a> with any questions.

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; -webkit-user-select: none; box-sizing: inherit;">First name , Thank you for registering for the Sisters&#39; Hope Foundation Externally-Led Patient Focused Drug Development (EL-PDFF) Informational Webinar. EL-PFDD webinar details: Date: Monday, April 28th, 2025Time: 12pm CST/1pm ESTVirtually via Zoom: Access the meeting at the link below. <a fr-original-style="" href="https://us02web.zoom.us/j/87333266080?pwd=k5jTwEtrYRDdwzaOLgk8bAG2Z0thQR.1" rel="noopener noreferrer" style="text-decoration-color: initial; -webkit-user-select: auto; box-sizing: inherit;" target="_blank">https://us02web.zoom.us/j/87333266080?pwd=k5jTwEtrYRDdwzaOLgk8bAG2Z0thQR.1</a> Agenda<ol fr-original-style="margin-top: 0px; margin-bottom: 0px; padding-inline-start: 48px;" id="isPasted" style="margin-top: 0px; margin-bottom: 0px; padding-inline-start: 48px; width: 100%; box-sizing: inherit;"><li dir="ltr" fr-original-style="list-style-type: decimal; font-size: 11pt; font-family: Arial, sans-serif; color: rgb(0, 0, 0); background-color: transparent; font-weight: 400; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-variant-alternates: normal; font-variant-numeric: normal; font-variant-east-asian: normal; font-variant-position: normal; text-decoration: none; vertical-align: baseline; white-space: pre;" style="list-style-type: decimal; font-size: 11pt; font-family: Arial, sans-serif; color: rgb(0, 0, 0); background-color: transparent; font-weight: 400; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-variant-alternates: normal; font-variant-numeric: normal; font-variant-east-asian: normal; font-variant-position: normal; text-decoration: none; vertical-align: baseline; white-space: pre; box-sizing: inherit;">Role of FDA</li><li dir="ltr" fr-original-style="list-style-type: decimal; font-size: 11pt; font-family: Arial, sans-serif; color: rgb(0, 0, 0); background-color: transparent; font-weight: 400; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-variant-alternates: normal; font-variant-numeric: normal; font-variant-east-asian: normal; font-variant-position: normal; text-decoration: none; vertical-align: baseline; white-space: pre;" style="list-style-type: decimal; font-size: 11pt; font-family: Arial, sans-serif; color: rgb(0, 0, 0); background-color: transparent; font-weight: 400; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-variant-alternates: normal; font-variant-numeric: normal; font-variant-east-asian: normal; font-variant-position: normal; text-decoration: none; vertical-align: baseline; white-space: pre; box-sizing: inherit;">Purpose of EL-PFDD</li><li dir="ltr" fr-original-style="list-style-type: decimal; font-size: 11pt; font-family: Arial, sans-serif; color: rgb(0, 0, 0); background-color: transparent; font-weight: 400; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-variant-alternates: normal; font-variant-numeric: normal; font-variant-east-asian: normal; font-variant-position: normal; text-decoration: none; vertical-align: baseline; white-space: pre;" style="list-style-type: decimal; font-size: 11pt; font-family: Arial, sans-serif; color: rgb(0, 0, 0); background-color: transparent; font-weight: 400; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-variant-alternates: normal; font-variant-numeric: normal; font-variant-east-asian: normal; font-variant-position: normal; text-decoration: none; vertical-align: baseline; white-space: pre; box-sizing: inherit;">Details about ALSP specific EL-PFDD</li><li dir="ltr" fr-original-style="list-style-type: decimal; font-size: 11pt; font-family: Arial, sans-serif; color: rgb(0, 0, 0); background-color: transparent; font-weight: 400; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-variant-alternates: normal; font-variant-numeric: normal; font-variant-east-asian: normal; font-variant-position: normal; text-decoration: none; vertical-align: baseline; white-space: pre;" style="list-style-type: decimal; font-size: 11pt; font-family: Arial, sans-serif; color: rgb(0, 0, 0); background-color: transparent; font-weight: 400; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-variant-alternates: normal; font-variant-numeric: normal; font-variant-east-asian: normal; font-variant-position: normal; text-decoration: none; vertical-align: baseline; white-space: pre; box-sizing: inherit;">Next Steps - Voice of the Patient</li><li dir="ltr" fr-original-style="list-style-type: decimal; font-size: 11pt; font-family: Arial, sans-serif; color: rgb(0, 0, 0); background-color: transparent; font-weight: 400; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-variant-alternates: normal; font-variant-numeric: normal; font-variant-east-asian: normal; font-variant-position: normal; text-decoration: none; vertical-align: baseline; white-space: pre;" style="list-style-type: decimal; font-size: 11pt; font-family: Arial, sans-serif; color: rgb(0, 0, 0); background-color: transparent; font-weight: 400; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-variant-alternates: normal; font-variant-numeric: normal; font-variant-east-asian: normal; font-variant-position: normal; text-decoration: none; vertical-align: baseline; white-space: pre; box-sizing: inherit;">How you can participate</li><li dir="ltr" fr-original-style="list-style-type: decimal; font-size: 11pt; font-family: Arial, sans-serif; color: rgb(0, 0, 0); background-color: transparent; font-weight: 400; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-variant-alternates: normal; font-variant-numeric: normal; font-variant-east-asian: normal; font-variant-position: normal; text-decoration: none; vertical-align: baseline; white-space: pre;" style="list-style-type: decimal; font-size: 11pt; font-family: Arial, sans-serif; color: rgb(0, 0, 0); background-color: transparent; font-weight: 400; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-variant-alternates: normal; font-variant-numeric: normal; font-variant-east-asian: normal; font-variant-position: normal; text-decoration: none; vertical-align: baseline; white-space: pre; box-sizing: inherit;">Registration Information</li></ol> Contact Person: Erin Sullivan, <a fr-original-style="" href="mailto:info@sistershopefoundation.org" rel="noopener noreferrer noopener noreferrer" style="text-decoration-color: initial; -webkit-user-select: auto; box-sizing: inherit;" target="_blank">info@sistershopefoundation.org</a> The webinar will be available to view on the Sisters&#39; Hope Foundation website if you are not able to attend the 4/28 session. The Sisters&#39; Hope Team: Heidi, Erin &amp; Jamie

<p style="font-style:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;text-align:start;text-indent:0px;text-transform:none;white-space:pre-wrap;word-spacing:0px;-webkit-text-stroke-width:0px;text-decoration:none;margin:0px;line-height:1.5;box-sizing:inherit;max-width:100%">Sisters' Hope Foundation will be hosting an externally-led patient focused drug development (EL-PFDD) informational webinar on Monday, April 28th, 2025 via Zoom. We encourage anyone attending the PFDD or considering attending the PFDD to watch this webinar. <p style="font-style:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;text-align:start;text-indent:0px;text-transform:none;white-space:pre-wrap;word-spacing:0px;-webkit-text-stroke-width:0px;text-decoration:none;margin:0px;line-height:1.5;box-sizing:inherit;max-width:100%">Topics covered will include:<ol><li>Role of the FDA</li><li>Purpose of EL-PFDD</li><li>Details about ALSP specific EL-PFDD</li><li>Next Steps - Voice of the Patient</li><li>How You Can Participate</li><li>Registration Information</li></ol>This session will be prerecorded and available to view on our website if you are not able to attend the webinar on 4/28. The Zoom link for the webinar will be sent in your registration confirmation email. Please contact Erin Sullivan at <a href="mailto:info@sistershopefoundation.org" target="_blank">info@sistershopefoundation.org</a> with any questions.

Sisters Hope Foundation For Hereditary Diffuse Leukoencephalop

EL-PFDD Informational Webinar

EL-PFDD Informational Webinar Registration

Free