Sisters Hope Foundation

**Context Profile for Sisters Hope Foundation**

1. **Organization Mission & Cause:**
   - **Mission:** Sisters Hope Foundation is dedicated to supporting individuals and families affected by brain disorders, with a specific focus on Adult-onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia (ALSP). Their mission is to provide hope, resources, and advocacy to improve the quality of life for those impacted by these conditions.
   - **Cause:** The foundation aims to raise awareness, fund research, and offer support to those dealing with brain disorders and ALSP. They strive to create a community of support and hope for affected individuals and their families.

2. **Type of Activities:**
   - **Fundraising Events:** The organization hosts events like "Hope Unleashed: Pup Walk for Brain Disorders & ALSP," which combines community engagement with fundraising efforts.
   - **Community Programs:** They organize community gatherings and informational sessions to educate and support those affected by brain disorders.
   - **Advocacy & Awareness Campaigns:** Sisters Hope Foundation actively works to raise awareness about ALSP and other brain disorders through various campaigns and partnerships.

3. **Tone of Voice:**
   - **Friendly and Inviting:** The language used is warm and welcoming, encouraging participation and community involvement.
   - **Inspiring and Hopeful:** The foundation emphasizes hope and support, aiming to inspire those affected by brain disorders.
   - **Casual and Engaging:** The tone is approachable, often using casual language to engage a broader audience.

4. **Emoji Usage:**
   - **Frequent Use:** The organization uses emojis to add a playful and engaging element to their communications. For example, they use emojis like 🎉 to convey excitement and friendliness in event promotions.

5. **Key Facts:**
   - **Founding Info:** Sisters Hope Foundation was established to address the needs of those affected by ALSP and similar brain disorders.
   - **Scale:** The foundation has conducted 15 forms and 15 email campaigns, indicating a proactive approach in outreach and engagement.
   - **Impact Metrics:** While specific impact metrics are not detailed, the organization focuses on community building and awareness raising as primary measures of success.
   - **Volunteer Info:** Opportunities for volunteering and participation are often highlighted in their events and campaigns, encouraging community involvement.

6. **Writing Guidelines:**
   - **Engage with Empathy:** Content should reflect the foundation's empathetic approach, focusing on support and community.
   - **Incorporate Emojis:** Use emojis to maintain the friendly and engaging tone seen in their communications.
   - **Highlight Hope and Support:** Emphasize themes of hope, support, and community in all messaging.
   - **Casual and Accessible Language:** Use simple, accessible language to ensure inclusivity and broad engagement.
   - **Call to Action:** Encourage participation and support through clear and inviting calls to action, whether for events, donations, or volunteer opportunities.

By adhering to these guidelines, AI-generated content can align closely with the Sisters Hope Foundation's mission and communication style, fostering a more personalized and effective engagement with their audience.

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

Externally-Led Patient Focused Drug Development Session Registration

900 Packer Ave

General Registration EL-PFDD

Free