Association For Glycogen Storage Disease

### Context Profile for Association For Glycogen Storage Disease

1. **Organization Mission & Cause**:
   - The Association For Glycogen Storage Disease (AGSD) is dedicated to improving the lives of individuals affected by glycogen storage diseases (GSD). Their mission focuses on raising awareness, providing education, and funding research for effective treatments and potential cures for these rare genetic disorders. They aim to connect families, support research initiatives, and advocate for better healthcare policies for those impacted by GSD.

2. **Type of Activities**:
   - AGSD organizes various activities including:
     - **Fundraising Events**: Notably the "A Rare Affair," an annual gala that combines networking with fundraising to support GSD research.
     - **Community Programs**: They offer educational resources and support networks for families affected by GSD.
     - **Awareness Campaigns**: They engage in initiatives to raise public awareness about glycogen storage diseases and the need for research funding.

3. **Tone of Voice**:
   - The tone is **friendly**, **inspiring**, and **professional**. Communications are designed to be welcoming and supportive, encouraging community involvement and highlighting the urgency of their cause. The language is accessible, aiming to engage both medical professionals and families affected by GSD.

4. **Emoji Usage**:
   - The website and communications do not prominently feature emojis. The tone remains professional and straightforward, focusing on clear messaging without the use of informal elements like emojis.

5. **Key Facts**:
   - **Founding Info**: The specific founding date is not detailed on the website, but the organization has a history of advocacy and support for GSD.
   - **Scale**: AGSD operates at a national level, connecting families and professionals across the country.
   - **Impact Metrics**: The organization emphasizes the importance of research funding and community support but does not provide specific quantitative metrics on their website.
   - **Volunteer Info**: Opportunities for volunteering and community involvement are likely available, although specific details are not highlighted on the website.

6. **Writing Guidelines**:
   - **Style**: Use clear, concise language that is accessible to a broad audience. Avoid jargon unless it is explained.
   - **Engagement**: Incorporate a welcoming and supportive tone that encourages participation and community building.
   - **Call to Action**: Clearly outline how readers can get involved, whether through donations, attending events, or spreading awareness.
   - **Personalization**: Use personalized greetings in communications, as seen in email templates, to foster a connection with recipients.

### Summary
This context profile provides a comprehensive overview of the Association For Glycogen Storage Disease, focusing on their mission, activities, tone, and communication style. This information will assist AI assistants in generating tailored content that resonates with the organization's audience and aligns with their values and goals.

General Admission

Tables of up to 8 people + 15 raffle tickets, name and logo on posters & table.  Max limit  is 2 tables
The maximum payment by credit or debit card is $4,999, and the maximum payment by ACH is $9,999. If paying by credit or debit, please make two payments of $4999.

Silver Table

Tables up to 10 people + 25 raffle tickets, name and logo on posters & table + photo and time with Emil.  
Max limit is 2 tables
The maximum payment by credit or debit card is $4,999, and the maximum payment by ACH is $9,999. Please make the necessary number of transactions per chosen method.

Gold Table

<p style="color:rgb(34, 34, 34);font-family:Arial, Helvetica, sans-serif;font-size:small;font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;background-color:rgb(255, 255, 255);text-decoration-thickness:initial;text-decoration-style:initial;text-decoration-color:initial;margin:0in;line-height:16.05pt;box-sizing:inherit"><img src="https://res.cloudinary.com/hxn9dbuhd/image/upload/v1726539648/mwtelfyd03nz5pwdp0wi.png" style="width:600px;display:block;vertical-align:top;margin:5px auto;text-align:center;position:relative;max-width:100%;cursor:pointer;padding:0px 1px;user-select:none;box-sizing:inherit" /><p style="color:rgb(34, 34, 34);font-family:Arial, Helvetica, sans-serif;font-size:small;font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;background-color:rgb(255, 255, 255);text-decoration-thickness:initial;text-decoration-style:initial;text-decoration-color:initial;margin:0in;line-height:16.05pt;box-sizing:inherit"> <p style="color:rgb(34, 34, 34);font-family:Arial, Helvetica, sans-serif;font-size:small;font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;background-color:rgb(255, 255, 255);text-decoration-thickness:initial;text-decoration-style:initial;text-decoration-color:initial;margin:0in;line-height:16.05pt;box-sizing:inherit">On behalf of Dr. Emil Kakkis, CEO of Ultragenyx, we are excited to extend an invitation to you to attend the annual A Rare Affair fundraising event on Sunday, January 12, 2025, which will be held the evening before the start of the JP Morgan Healthcare Conference in Union Square, San Francisco at the incomparable Starlite Room above the Beacon Grand Hotel (the old Sir Francis Drake Hotel).<p style="color:rgb(34, 34, 34);font-family:Arial, Helvetica, sans-serif;font-size:small;font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;background-color:rgb(255, 255, 255);text-decoration-thickness:initial;text-decoration-style:initial;text-decoration-color:initial;margin:0in;line-height:16.05pt;box-sizing:inherit"> <p style="color:rgb(34, 34, 34);font-family:Arial, Helvetica, sans-serif;font-size:small;font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;background-color:rgb(255, 255, 255);text-decoration-thickness:initial;text-decoration-style:initial;text-decoration-color:initial;margin:0in;line-height:16.05pt;box-sizing:inherit">This extraordinary event is in its 11th year after a pandemic hiatus and is a spectacular networking and wine-tasting event with a focus on enjoying the wine, the food, and the company -- all while raising awareness of the urgent need for developing rare disease treatments. This event will include 250 rare disease biotech executives, venture capitalists and finance executives, wine enthusiasts, and rare disease advocates.<p style="color:rgb(34, 34, 34);font-family:Arial, Helvetica, sans-serif;font-size:small;font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;background-color:rgb(255, 255, 255);text-decoration-thickness:initial;text-decoration-style:initial;text-decoration-color:initial;margin:0in;line-height:16.05pt;box-sizing:inherit"> <p style="color:rgb(34, 34, 34);font-family:Arial, Helvetica, sans-serif;font-size:small;font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;background-color:rgb(255, 255, 255);text-decoration-thickness:initial;text-decoration-style:initial;text-decoration-color:initial;margin:0in;line-height:16.05pt;box-sizing:inherit">Listed below, you'll find all the additional details about A Rare Affair, where the ticket proceeds will go, and how to order your tickets if you'd like to attend and are available. We hope to see you there!

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);display:inline-block;margin:0px;padding:1px 8px;font-size:11px;line-height:16px;overflow-wrap:anywhere;user-select:none;box-sizing:inherit">First name , Thank you for registering for our event and supporting our cause. Your registration greatly helps our mission. 🚀 If you would like to contribute further, contact us to become a volunteer, or talk to your friends about our cause! Kim Burneypresident@agsdus.org

<p style="font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;text-decoration-thickness:initial;text-decoration-style:initial;margin:0in;line-height:16.05pt;box-sizing:inherit;max-width:100%"><img src="https://res.cloudinary.com/hxn9dbuhd/image/upload/v1726539648/mwtelfyd03nz5pwdp0wi.png" style="width:600px;display:block;vertical-align:top;margin:5px auto;text-align:center;position:relative;cursor:pointer;padding:0px 1px;user-select:none;box-sizing:inherit;max-width:100%" /><p style="font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;text-decoration-thickness:initial;text-decoration-style:initial;margin:0in;line-height:16.05pt;box-sizing:inherit;max-width:100%"> <p style="font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;text-decoration-thickness:initial;text-decoration-style:initial;margin:0in;line-height:16.05pt;box-sizing:inherit;max-width:100%">On behalf of Dr. Emil Kakkis, CEO of Ultragenyx, we are excited to extend an invitation to you to attend the annual A Rare Affair fundraising event on Sunday, January 12, 2025, which will be held the evening before the start of the JP Morgan Healthcare Conference in Union Square, San Francisco at the incomparable Starlite Room above the Beacon Grand Hotel (the old Sir Francis Drake Hotel).<p style="font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;text-decoration-thickness:initial;text-decoration-style:initial;margin:0in;line-height:16.05pt;box-sizing:inherit;max-width:100%"> <p style="font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;text-decoration-thickness:initial;text-decoration-style:initial;margin:0in;line-height:16.05pt;box-sizing:inherit;max-width:100%">This extraordinary event is in its 11th year after a pandemic hiatus and is a spectacular networking and wine-tasting event with a focus on enjoying the wine, the food, and the company -- all while raising awareness of the urgent need for developing rare disease treatments. This event will include 250 rare disease biotech executives, venture capitalists and finance executives, wine enthusiasts, and rare disease advocates.<p style="font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;text-decoration-thickness:initial;text-decoration-style:initial;margin:0in;line-height:16.05pt;box-sizing:inherit;max-width:100%"> <p style="font-style:normal;font-variant-ligatures:normal;font-variant-caps:normal;font-weight:400;letter-spacing:normal;orphans:2;text-align:start;text-indent:0px;text-transform:none;widows:2;word-spacing:0px;-webkit-text-stroke-width:0px;white-space:normal;text-decoration-thickness:initial;text-decoration-style:initial;margin:0in;line-height:16.05pt;box-sizing:inherit;max-width:100%">Listed below, you'll find all the additional details about A Rare Affair, where the ticket proceeds will go, and how to order your tickets if you'd like to attend and are available. We hope to see you there!

Association For Glycogen Storage Disease

Rare Affair

450 Powell St

Add a donation for Association For Glycogen Storage Disease

General Admission

$250

Silver Table

$9,998

Gold Table

$14,998