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.

General Registration EL-PFDD

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' Hope Foundation Externally-Led Patient Focused Drug Development session. EL-PFDD details: Date: Friday, June 20th, 2025Time: 1pm-5pmIn Person: Live! Casino & Event Center, 900 Packer Avenue, Philadelphia, PA, 19148Virtually via Zoom: Access the meeting at the link below. <a href="https://us02web.zoom.us/j/87080351852?pwd=FTlYlup643Aw48M9MKU0xRXhpp93tY.1" style="text-decoration-color:initial;-webkit-user-select:auto;box-sizing:inherit">https://us02web.zoom.us/j/87080351852?pwd=FTlYlup643Aw48M9MKU0xRXhpp93tY.1</a> Agenda 1:00 pm - Welcome: Sisters’ Hope Foundation 1:05 pm - Welcome: FDA Representative 1:10 pm - ALSP Clinical Overview: Clinician 1:20 pm - Introduction and Meeting Overview 1:25 pm - Remote Demographic Polling Session 1: Health and Daily Effects  of Living with ALSP 1:30 pm - Panelist Testimonials 2:00 pm - Moderated Audience Discussion and Remote Polling 3:00 pm - BREAK Session 2: Current Approaches and Future Preferences to Treating ALSP 3:15 pm Panelist Testimonials 3:45 pm - Moderated Audience Discussion and Remote Polling 4:45 pm - Meeting Summary 4:55 pm - Next Steps and Closing Contact Person: Erin Sullivan, <a href="mailto:erin@sistershopefoundation.org" style="text-decoration-color:initial;-webkit-user-select:auto;box-sizing:inherit">erin@sistershopefoundation.org</a> For in-person attendees, we have reserved a block of rooms at Live! Hotel. Discounted reservations for Friday and Saturday night can be made at the following link:<a href="https://book.passkey.com/e/50991245" style="text-decoration-color:initial;-webkit-user-select:auto;box-sizing:inherit">https://book.passkey.com/e/50991245</a>For any questions or issues with room reservations, please contact Jamie LaFleur, <a href="mailto:marketing@sistershopefoundation.org" style="text-decoration-color:initial;-webkit-user-select:auto;box-sizing:inherit">marketing@sistershopefoundation.org</a> A copy of the Code of Conduct Policy and Photograph, Video, Quotation and Sound Recording Consent & Release are attached to this email for your records. We look forward to seeing you at the EL-PFDD! The Sisters' Hope Team: Heidi, Erin & Jamie

<p style="margin:0px;font-style:normal;font-variant-caps:normal;font-weight:normal;font-stretch:normal;line-height:normal;font-kerning:auto;font-variant-alternates:normal;font-variant-ligatures:normal;font-variant-numeric:normal;font-variant-east-asian:normal;font-variant-position:normal;font-feature-settings:normal;font-optical-sizing:auto;font-variation-settings:normal;width:100%;box-sizing:inherit;max-width:100%">The Sisters' Hope Foundation externally-led patient focused drug development (EL-PFDD) session will be held on Friday June 20th, 2025. Information and insights gained during this meeting will be summarized in the "Voice of the Patient" report that will be published for public use. Register to participate in person or virtually through Zoom.<p style="margin:0px;font-style:normal;font-variant-caps:normal;font-weight:normal;font-stretch:normal;line-height:normal;font-kerning:auto;font-variant-alternates:normal;font-variant-ligatures:normal;font-variant-numeric:normal;font-variant-east-asian:normal;font-variant-position:normal;font-feature-settings:normal;font-optical-sizing:auto;font-variation-settings:normal;min-height:19px;width:100%;box-sizing:inherit;max-width:100%"> <p style="margin:0px;font-style:normal;font-variant-caps:normal;font-weight:normal;font-stretch:normal;line-height:normal;font-kerning:auto;font-variant-alternates:normal;font-variant-ligatures:normal;font-variant-numeric:normal;font-variant-east-asian:normal;font-variant-position:normal;font-feature-settings:normal;font-optical-sizing:auto;font-variation-settings:normal;width:100%;box-sizing:inherit;max-width:100%">Agenda 1:00 pm - Welcome: Sisters’ Hope Foundation 1:05 pm - Welcome: FDA Representative 1:10 pm - ALSP Clinical Overview: Clinician 1:20 pm - Introduction and Meeting Overview 1:25 pm - Remote Demographic Polling Session 1: Health and Daily Effects  of Living with ALSP 1:30 pm - Panelist Testimonials 2:00 pm - Moderated Audience Discussion and Remote Polling 3:00 pm - BREAK Session 2: Current Approaches and Future Preferences to Treating ALSP 3:15 pm Panelist Testimonials 3:45 pm - Moderated Audience Discussion and Remote Polling 4:45 pm - Meeting Summary 4:55 pm - Next Steps and Closing<p style="margin:0px;font-style:normal;font-variant-caps:normal;font-weight:normal;font-stretch:normal;line-height:normal;font-kerning:auto;font-variant-alternates:normal;font-variant-ligatures:normal;font-variant-numeric:normal;font-variant-east-asian:normal;font-variant-position:normal;font-feature-settings:normal;font-optical-sizing:auto;font-variation-settings:normal;min-height:19px;width:100%;box-sizing:inherit;max-width:100%"> <p style="margin:0px;font-style:normal;font-variant-caps:normal;font-weight:normal;font-stretch:normal;line-height:normal;font-kerning:auto;font-variant-alternates:normal;font-variant-ligatures:normal;font-variant-numeric:normal;font-variant-east-asian:normal;font-variant-position:normal;font-feature-settings:normal;font-optical-sizing:auto;font-variation-settings:normal;width:100%;box-sizing:inherit;max-width:100%">Please contact Erin Sullivan at <a href="mailto:erin@sistershopefoundation.org">erin@sistershopefoundation.org</a> with any questions.<p style="margin:0px;font-style:normal;font-variant-caps:normal;font-weight:normal;font-stretch:normal;line-height:normal;font-kerning:auto;font-variant-alternates:normal;font-variant-ligatures:normal;font-variant-numeric:normal;font-variant-east-asian:normal;font-variant-position:normal;font-feature-settings:normal;font-optical-sizing:auto;font-variation-settings:normal;width:100%;box-sizing:inherit;max-width:100%"> Friday 6/20: FDA Patient Focused Drug Development (EL-PFDD) session for patients and care partners.<p style="margin:0px;font-style:normal;font-variant-caps:normal;font-weight:normal;font-stretch:normal;line-height:normal;font-kerning:auto;font-variant-alternates:normal;font-variant-ligatures:normal;font-variant-numeric:normal;font-variant-east-asian:normal;font-variant-position:normal;font-feature-settings:normal;font-optical-sizing:auto;font-variation-settings:normal;width:100%;box-sizing:inherit;max-width:100%"> Saturday 6/21: 2025 ALSP Community Conference!<p style="margin:0px;font-style:normal;font-variant-caps:normal;font-weight:normal;font-stretch:normal;line-height:normal;font-kerning:auto;font-variant-alternates:normal;font-variant-ligatures:normal;font-variant-numeric:normal;font-variant-east-asian:normal;font-variant-position:normal;font-feature-settings:normal;font-optical-sizing:auto;font-variation-settings:normal;width:100%;box-sizing:inherit;max-width:100%">*Ticket includes lunch &amp; snacks.<p style="margin:0px;font-style:normal;font-variant-caps:normal;font-weight:normal;font-stretch:normal;line-height:normal;font-kerning:auto;font-variant-alternates:normal;font-variant-ligatures:normal;font-variant-numeric:normal;font-variant-east-asian:normal;font-variant-position:normal;font-feature-settings:normal;font-optical-sizing:auto;font-variation-settings:normal;width:100%;box-sizing:inherit;max-width:100%"><a href="https://www.zeffy.com/en-US/ticketing/2025-alsp-community-conference-tickets">Community Conference Registration &amp; Tickets</a><p style="margin:0px;font-style:normal;font-variant-caps:normal;font-weight:normal;font-stretch:normal;line-height:normal;font-kerning:auto;font-variant-alternates:normal;font-variant-ligatures:normal;font-variant-numeric:normal;font-variant-east-asian:normal;font-variant-position:normal;font-feature-settings:normal;font-optical-sizing:auto;font-variation-settings:normal;width:100%;box-sizing:inherit;max-width:100%"><a href="https://www.zeffy.com/en-US/ticketing/2025-alsp-community-conference-sponsorships">Community Conference Sponsorship Opportunities</a><p style="margin:0px;font-style:normal;font-variant-caps:normal;font-weight:normal;font-stretch:normal;line-height:normal;font-kerning:auto;font-variant-alternates:normal;font-variant-ligatures:normal;font-variant-numeric:normal;font-variant-east-asian:normal;font-variant-position:normal;font-feature-settings:normal;font-optical-sizing:auto;font-variation-settings:normal;width:100%;box-sizing:inherit;max-width:100%"><a href="https://book.passkey.com/event/50991245/owner/24248/home" target="_blank">Reserve Discounted Hotel Rooms Here!</a><p style="margin:0px;font-style:normal;font-variant-caps:normal;font-weight:normal;font-stretch:normal;line-height:normal;font-kerning:auto;font-variant-alternates:normal;font-variant-ligatures:normal;font-variant-numeric:normal;font-variant-east-asian:normal;font-variant-position:normal;font-feature-settings:normal;font-optical-sizing:auto;font-variation-settings:normal;width:100%;box-sizing:inherit;max-width:100%"> Saturday Night 6/21: Enjoy a carefree night with friends and family at our Rock Out ALSP Benefit Concert with Philly's favorite cover band, Mr. Greengenes!<p style="margin:0px;font-style:normal;font-variant-caps:normal;font-weight:normal;font-stretch:normal;line-height:normal;font-kerning:auto;font-variant-alternates:normal;font-variant-ligatures:normal;font-variant-numeric:normal;font-variant-east-asian:normal;font-variant-position:normal;font-feature-settings:normal;font-optical-sizing:auto;font-variation-settings:normal;width:100%;box-sizing:inherit;max-width:100%"><a href="https://www.zeffy.com/en-US/ticketing/mrgg-sponsorship-opportunities" target="_blank">Concert Sponsorship Opportunities</a><p style="margin:0px;font-style:normal;font-variant-caps:normal;font-weight:normal;font-stretch:normal;line-height:normal;font-kerning:auto;font-variant-alternates:normal;font-variant-ligatures:normal;font-variant-numeric:normal;font-variant-east-asian:normal;font-variant-position:normal;font-feature-settings:normal;font-optical-sizing:auto;font-variation-settings:normal;width:100%;box-sizing:inherit;max-width:100%"><a href="https://www.sistershopefoundation.org/mrgg" target="_blank">Concert Tickets on Sale Friday, March 7th at 10am</a> Venue: Live! Casino &amp; Hotel, 900 Packer Avenue, Philadelphia, PA<p style="margin:0px;font-style:normal;font-variant-caps:normal;font-weight:normal;font-stretch:normal;line-height:normal;font-kerning:auto;font-variant-alternates:normal;font-variant-ligatures:normal;font-variant-numeric:normal;font-variant-east-asian:normal;font-variant-position:normal;font-feature-settings:normal;font-optical-sizing:auto;font-variation-settings:normal;width:100%;box-sizing:inherit;max-width:100%"> Code of ConductSisters’ Hope Foundation is committed to observing and promoting the highest standards of ethicalconduct in the performance of their responsibilities and with their community and expect the samefrom all ALSP community members and organizations collaborating with SHF.We promote collaboration, cooperation, and partnership among our community.We respect the diversity of opinions as expressed or acted upon by our community.I, ____________________________, pledge to accept this code as a minimum guideline for ethicalconduct and shall:Exercise reasonable care, good faith and due diligence in organizational affairs and interactions withthe organization.Fully disclose, at the earliest opportunity, information that may result in a perceived or actual conflictof interest.Maintain a professional level of courtesy, respect, and objectivity in all SHF activities.Exercise the powers invested for the good of all community members of the organization rather thanfor his or her personal benefit.Ensure the right of all community members to appropriate and effective services withoutdiscrimination on the basis of geography, political, religious, or socio-economical characteristics of thestate or region represented.Ensure the right of all community members to appropriate and effective services withoutdiscrimination on the basis of the organization’s volunteer or staff make-up in respect to gender,sexual orientation, national origin, race, religion, age, political affiliation or disability, in accordancewith all applicable legal and regulatory requirements.SHF reserves the right to discontinue any relationship with any individual due to:• Negativity• Harassment• Defamation• Lack of respect towards the organization and/or community membersWe understand that people have differing opinions, personality types, and some may be moreaggressive, direct, and bold than others. What we don’t understand nor tolerate is hate towardsothers, especially with malicious intent.If you cannot maintain composure and a professional demeanor when interacting with SHF and/orcommunity members, or defame SHF, its staff, board members or community as a whole, SHFreserve the right to discontinue all communications with you including blocking you from our socialmedia, newsletters, cell phones, and discontinuing all communications whether it be via email or in-person. If we must take any of these actions, you will not be included, welcome or invited to webinars,in-person events, conferences, etc. hosted or co-hosted by SHF.At SHF, we take respect for our staff and community members very seriously and expect the samefrom anyone interacting with us. Photograph, Video, Quotation and Sound Recording: Consent and ReleaseBy signing this Photograph, Video, Quotation and Sound Recording Consent andRelease Form, you are irrevocably giving Sisters’ Hope Foundation and its agents,employees, successors, licensees, and assigns permission to take and use quotations,photographs, video and/or sound recordings of you for any educational, institutional,scientific, promotional, or informational purposes whatsoever.You acknowledge that by attending the Externally Led Patient Focused DrugDevelopment Meeting (EL-PFDD) and/or the ALSP Community Conference and/or anyand all activities hosted by SHF including the concert that your likeness may becaptured by video and/or photography content that may be used publicly via digital andor printed distribution.SHF may use quotations, photographs, video and sound recordings containing yourimage, likeness, appearance and voice in any manner or media, including use on socialmedia and web pages. The quotations, photographs, video and sound recordings maybe used in whole or in part, alone or with other recordings.SHF has the right to copy, edit, alter, retouch, revise and otherwise change thephotographs, video, and sound recordings at its discretion. You waive your right toinspect or approve any uses made of your quotation, photograph, video, or soundrecording in connection with this consent and release. All right, title, and interest in thequotations, photographs, video and sound recordings belong solely to SHF.Your consent to the use of the quotations, photographs, video and sound recordings ofyour image, likeness, appearance, and voice is for forever. You will not receivecompensation for the use of your quotation, image, likeness, appearance, and voicenow or in the future. You hereby release and discharge SHF from any and all liabilityarising out of or in any way connected to the use of your quotation, photograph, videoand sound recordings for the authorized purpose(s) described above, including withoutlimitation, any liability based on rights of publicity, invasion of privacy and other civilrights, moral rights, copyright infringement, defamation, libel and slander.You understand and agree to the conditions outlined in this Photograph, Video,Quotation and Sound Recording Release and Consent form. You acknowledge that youare fully aware of the contents of this release and are under no disability, duress, orundue influence at the time of my signing of this instrument. You certify that you areeighteen (18) years of age or over and have the legal capacity to make this decision.

Sisters Hope Foundation For Hereditary Diffuse Leukoencephalop

Externally-Led Patient Focused Drug Development Session Registration

900 Packer Ave

General Registration EL-PFDD

Free