Vein of Galen Malformation Support Network

### Context Profile for Vein of Galen Malformation Support Network

#### 1. Organization Mission & Cause
The Vein of Galen Malformation Support Network (VOGM) is dedicated to supporting families affected by Vein of Galen Malformation (VOGM), a rare brain condition that impacts children. Their mission is to raise awareness about VOGM, provide resources and support to affected families, and facilitate access to vital medical care. The organization aims to make this rare condition feel less isolating by fostering a community of support and advocacy.

#### 2. Type of Activities
- **Fundraising Campaigns:** VOGM organizes annual events such as the "Walkathon" to raise funds for medical assistance and awareness. The most recent campaign, "People for Theo," aims to raise $35,000 to help children access crucial brain surgeries.
- **Community Programs:** They provide a supportive network for families, offering resources and guidance as they navigate the complexities of VOGM.
- **Awareness Initiatives:** The organization actively promotes awareness during AVM Awareness Month in October, encouraging community participation in events that highlight the challenges faced by families dealing with VOGM.

#### 3. Tone of Voice
The tone of voice used by VOGM is **friendly, supportive, and inspiring**. The language is accessible and empathetic, aiming to connect with families and supporters on a personal level. The organization communicates urgency regarding the need for awareness and funding while maintaining a hopeful outlook for the future of affected children.

#### 4. Emoji Usage
The organization does not prominently use emojis in their communications, focusing instead on clear and heartfelt language to convey their messages. This approach aligns with their serious mission while still being approachable.

#### 5. Key Facts
- **Founding Information:** Specific founding details were not found on the website, but the organization has established itself as a key resource for families affected by VOGM.
- **Scale:** The organization has a total of 95 forms and has conducted 16 email campaigns, indicating an active engagement with their community.
- **Impact Metrics:** The current goal for their fundraising campaign is $35,000, which will directly support children needing medical assistance.
- **Volunteer Information:** While specific volunteer details were not highlighted, the organization encourages community involvement through events like the Walkathon.

#### 6. Writing Guidelines
- **Style:** Use a conversational and supportive tone, focusing on empathy and community. 
- **Content Structure:** Begin with a clear statement of purpose, followed by details about events or initiatives, and conclude with a call to action that encourages participation or support.
- **Emphasis on Community:** Highlight the importance of community support and shared experiences among families affected by VOGM.
- **Use of Visuals:** Incorporate images that resonate emotionally with the audience, as seen in their email campaigns and event promotions.

This context profile provides a comprehensive understanding of the Vein of Galen Malformation Support Network, enabling AI assistants to create tailored and impactful content that aligns with the organization's mission and values.

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Table of 10

Table of 8

Individual Ticket - Adults (21+ years)

Individual Ticket - Youth/Teen

Sponsor a VOGM child's travel for treatment

Check made out to Vein of Galen Malformation Support Network
Address to send check: 
VOGM Support Network
c/o Marlene Brochu
20 Bellevue Avenue
Bangor, Maine 04401

<div 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"><div style="background-color:rgb(255, 255, 255);box-sizing:inherit"><p style="box-sizing:inherit">Dear Valued Supporters:</p><p style="box-sizing:inherit">We are excited to announce the details for The Great Galen Gala, in support of families of children with the Vein of Galen malformation, and the leading specialists dedicated to their treatment. </p><p style="box-sizing:inherit">The Great Galen Gala will bring together neurovascular specialists, corporate benefactors, advocates, survivors, and families dedicated to treating this rare condition. </p><div style="white-space:pre-wrap"><div><div><span fr-original-style style="box-sizing:inherit"><span fr-original-style style="box-sizing:inherit">The evening will feature cocktails, exquisite food, enticing auction items and dancing. Our program will include:</span></span></div></div><ul><li style="box-sizing:inherit"><div><span fr-original-style style="box-sizing:inherit"><span fr-original-style style="box-sizing:inherit">A celebration of Dr. Alejandro Berenstein's remarkable career achievements </span></span></div></li><li style="box-sizing:inherit"><div><span fr-original-style style="box-sizing:inherit"><span fr-original-style style="box-sizing:inherit">Presentation of the 2024 VOGM Support Network research grant recipient</span></span></div></li><li style="box-sizing:inherit"><div><span fr-original-style style="box-sizing:inherit"><span fr-original-style style="box-sizing:inherit">Recognition of the 2024 recipient of the VOGM Support Network Innovation Award.</span></span></div></li></ul></div><p style="box-sizing:inherit">The VOGM Support Network is the largest nonprofit organization in the world dedicated to raising awareness of Vein Of Galen malformation and aiding VOGM families through education, advocacy, and support. </p><p style="box-sizing:inherit">The statistics don’t lie:</p><ul><li style="box-sizing:inherit">1 in 50,000 children in the world are affected by VOGM</li><li style="box-sizing:inherit">VOGM represents 30% of pediatric AVMs</li><li style="box-sizing:inherit">VOGM has a mortality rate greater than 90% without treatment</li></ul><p style="box-sizing:inherit">Raising awareness, improving education, and ensuring access to high-volume VOGM specialists are vital for preventing unfavorable outcomes in this severely underfunded and deadly disease.</p><p style="box-sizing:inherit">We invite you to support the inaugural Great Galen Gala in any of the ways below:</p><ul><li style="box-sizing:inherit">Sponsor the event and receive great visibility and Gala tickets</li><li style="box-sizing:inherit">Purchase tickets or a table and bring your colleagues, friends and family</li><li style="box-sizing:inherit">Participate in our exciting auction</li></ul><p style="box-sizing:inherit">We hope to see you at the Edison Ballroom on October 5th, 2024 for an unforgettable evening. Thank you in advance for your support!</p></div></div>

<p style="width:100%;margin-top:0px;margin-bottom:0px;box-sizing:inherit;color:rgb(15, 14, 91)">Hello <span contenteditable="false" data-custom-variable="{{firstname}}" fr-original-class="fr-deletable styled-tag-chip " fr-original-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;-webkit-user-select:none;box-sizing:inherit;" 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;-webkit-user-select:none;box-sizing:inherit">First name</span> <span contenteditable="false" data-custom-variable="{{lastname}}" fr-original-class="fr-deletable styled-tag-chip " fr-original-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;-webkit-user-select:none;box-sizing:inherit;" 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;-webkit-user-select:none;box-sizing:inherit">Last name</span>,</p><p style="width:100%;margin-top:0px;margin-bottom:0px;box-sizing:inherit;color:rgb(15, 14, 91)"><br /></p><p style="width:100%;margin-top:0px;margin-bottom:0px;box-sizing:inherit;color:rgb(15, 14, 91)">From the bottom of our hearts, the VOGM Support Network family would like to thank you for your registration for the inaugural Great Galen Gala. Your commitment is a testament to your dedication to a better world for our VOGM warriors.</p><p style="width:100%;margin-top:0px;margin-bottom:0px;box-sizing:inherit;color:rgb(15, 14, 91)"><br /></p><p style="width:100%;margin-top:0px;margin-bottom:0px;box-sizing:inherit;color:rgb(15, 14, 91)">Below are some important information to remember: </p><p style="width:100%;margin-top:0px;margin-bottom:0px;box-sizing:inherit;color:rgb(15, 14, 91)"><br /></p><p style="width:100%;margin-top:0px;margin-bottom:0px;box-sizing:inherit;color:rgb(15, 14, 91)">📍  Location: The Edison Ballroom In Manhattan, NY</p><p style="width:100%;margin-top:0px;margin-bottom:0px;box-sizing:inherit;color:rgb(15, 14, 91)">⏳: On Saturday, October 5th, 2024 at 6:30 PM   </p><p style="width:100%;margin-top:0px;margin-bottom:0px;box-sizing:inherit;color:rgb(15, 14, 91)"><br /></p><p style="width:100%;margin-top:0px;margin-bottom:0px;box-sizing:inherit;color:rgb(15, 14, 91)"><br /></p><p style="width:100%;margin-top:0px;margin-bottom:0px;box-sizing:inherit;color:rgb(15, 14, 91)">With heartfelt thanks,</p><p style="width:100%;margin-top:0px;margin-bottom:0px;box-sizing:inherit;color:rgb(15, 14, 91)"><br /></p><p style="width:100%;margin-top:0px;margin-bottom:0px;box-sizing:inherit;color:rgb(15, 14, 91)">Marlene Brochu</p><p style="width:100%;margin-top:0px;margin-bottom:0px;box-sizing:inherit;color:rgb(15, 14, 91)">CEO/Co-Founder</p><p style="width:100%;margin-top:0px;margin-bottom:0px;box-sizing:inherit;color:rgb(15, 14, 91)">info@vogm.org</p><p style="width:100%;margin-top:0px;margin-bottom:0px;box-sizing:inherit;color:rgb(15, 14, 91)">706-338-1387</p>

<div><div><p style="box-sizing:inherit">Dear Valued Supporters:</p><p style="box-sizing:inherit">We are excited to announce the details for The Great Galen Gala, in support of families of children with the Vein of Galen malformation, and the leading specialists dedicated to their treatment. </p><p style="box-sizing:inherit">The Great Galen Gala will bring together neurovascular specialists, corporate benefactors, advocates, survivors, and families dedicated to treating this rare condition. </p><div><div><div><span><span>The evening will feature cocktails, exquisite food, enticing auction items and dancing. Our program will include:</span></span></div></div><ul><li><div><span><span>A celebration of Dr. Alejandro Berenstein's remarkable career achievements </span></span></div></li><li><div><span><span>Presentation of the 2024 VOGM Support Network research grant recipient</span></span></div></li><li><div><span><span>Recognition of the 2024 recipient of the VOGM Support Network Innovation Award.</span></span></div></li></ul></div><p style="box-sizing:inherit">The VOGM Support Network is the largest nonprofit organization in the world dedicated to raising awareness of Vein Of Galen malformation and aiding VOGM families through education, advocacy, and support. </p><p style="box-sizing:inherit">The statistics don’t lie:</p><ul><li>1 in 50,000 children in the world are affected by VOGM</li><li>VOGM represents 30% of pediatric AVMs</li><li>VOGM has a mortality rate greater than 90% without treatment</li></ul><p style="box-sizing:inherit">Raising awareness, improving education, and ensuring access to high-volume VOGM specialists are vital for preventing unfavorable outcomes in this severely underfunded and deadly disease.</p><p style="box-sizing:inherit">We invite you to support the inaugural Great Galen Gala in any of the ways below:</p><ul><li>Sponsor the event and receive great visibility and Gala tickets</li><li>Purchase tickets or a table and bring your colleagues, friends and family</li><li>Participate in our exciting auction</li></ul><p style="box-sizing:inherit">We hope to see you at the Edison Ballroom on October 5th, 2024 for an unforgettable evening. Thank you in advance for your support!</p></div></div>

Vein of Galen Malformation Support Network

THE GREAT GALEN GALA - Individual Tickets & Tables

240 W 47th St

Table of 10

$6,000

Table of 8

$4,800

Individual Ticket - Adults (21+ years)

$600

Individual Ticket - Youth/Teen

$350

Sponsor a VOGM child's travel for treatment

$500

Add a donation for Vein of Galen Malformation Support Network