Alliance of PKU Families

### Context Profile for Alliance of PKU Families

1. **Organization Mission & Cause**:
   - The Alliance of PKU Families is dedicated to supporting individuals and families affected by Phenylketonuria (PKU) and allied disorders. Their mission is to provide education, resources, and community support to improve the quality of life for those impacted by these rare metabolic disorders. They aim to foster connections among families and advocate for better treatment options and awareness.

2. **Type of Activities**:
   - **Community Programs**: They organize events such as Camp Huber, which provides a supportive environment for campers with PKU and allied disorders.
   - **Fundraising Campaigns**: Initiatives like "Rare Grams" allow supporters to send personalized messages to campers, enhancing their experience at camp while raising funds for the organization.
   - **Educational Resources**: They offer information and resources for families navigating the challenges of PKU.
   - **Advocacy**: The organization engages in advocacy efforts to raise awareness about PKU and promote better healthcare solutions.

3. **Tone of Voice**:
   - The tone of the website and communications is **friendly, supportive, and inspiring**. The language is inclusive and encourages community involvement, emphasizing the importance of connection and support among families affected by PKU. The use of phrases like "make a camper feel rare and remarkable" conveys warmth and positivity.

4. **Emoji Usage**:
   - The organization utilizes emojis sparingly but effectively in their communications. For example, they use the sparkle emoji (✨) in the "Rare Grams" campaign to add a cheerful and celebratory tone. Emoji usage appears to enhance emotional engagement without overwhelming the text.

5. **Key Facts**:
   - **Founding Info**: Specific founding details were not available on the website.
   - **Scale**: The organization has a total of 12 forms and has conducted 52 email campaigns, indicating an active engagement with their community.
   - **Impact Metrics**: While specific metrics were not detailed, the emphasis on community support and engagement suggests a focus on building a strong network for families affected by PKU.
   - **Volunteer Info**: The website encourages volunteer involvement, highlighting the importance of community support in their initiatives.

6. **Writing Guidelines**:
   - **Style**: Use a friendly and supportive tone, focusing on community and connection. 
   - **Language**: Incorporate inclusive language that resonates with families and individuals affected by PKU. 
   - **Call to Action**: Use clear and encouraging calls to action, such as "Join us in supporting our rare community!" or "Make a camper feel rare and remarkable!"
   - **Emojis**: Use emojis to add warmth and positivity, but keep them relevant and minimal to maintain professionalism.

This context profile should guide the creation of personalized and engaging content for the Alliance of PKU Families, ensuring alignment with their mission, values, and communication style.

Membership

<img src="https://res.cloudinary.com/hxn9dbuhd/image/upload/v1662321785/v5mlrv7ewb4sn6ugiugy.png" style="width:531px;position:relative;max-width:100%;cursor:pointer;padding:0px 1px;user-select:none;box-sizing:inherit" /> The Maryland Alliance of PKU Families was started in 1994 by parents of children that have PKU to promote the health and well-being of persons with PKU. The inaugural event, Camp Huber for people with PKU and their families/support persons, combined educational experiences with networking and entertainment, where PKU food was on the menu and no explanations of diet were needed. Over the years, MAPKUF expanded their goals and reach, now hosting several events throughout the year, and engaging about 100 people from across the Mid-Atlantic (and sometimes further). MAPKUF works to make camp, and the other events, affordable to all families that already struggle with high costs of insurance, medical food, formula, and medication, to ensure they are part of the MAPKUF community. We are working on growing and expanding our initiatives, but we need support both financially as well as from members like you committed to helping us grow! Thank you for considering joining our ranks! Please see the chart below as reference to where you money will be used:  <img src="https://res.cloudinary.com/hxn9dbuhd/image/upload/v1662322073/xdq5mb8ceji8cjrzrmrn.png" style="width:481px;position:relative;max-width:100%;cursor:pointer;padding:0px 1px;user-select:none;box-sizing:inherit" />Please see a more detailed budget here:<a href="https://docs.google.com/spreadsheets/d/1YUOsKyvAcrwq9gJpVwQslvj0f7x4uoE4/edit?usp=sharing&ouid=106645138876394246060&rtpof=true&sd=true">https://docs.google.com/spreadsheets/d/1YUOsKyvAcrwq9gJpVwQslvj0f7x4uoE4/edit?usp=sharing&ouid=106645138876394246060&rtpof=true&sd=true</a> Other ways to donate: If you would like to donate by check, please send it addressed to MAPKUF to: 5925 Florey RoadHanover, MD 21076 Or send us your donation through paypal: <a href="https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=3524FDD6HRWUE&source=url">https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=3524FDD6HRWUE&source=url</a>. When donating via these by mail or paypal, please also email <a href="mailto:mapkuf@gmail.com">mapkuf@gmail.com</a> so we can send a tax receipt or include your best contact information with your payment. MAPKUF is a non-profit 501c and all donations are tax deductible.

Hello First name Last name, Thank you from the bottom of my heart for choosing to become a member of Maryland Alliance of PKU Families. We can't wait to spend this year with you as a member. Please also make sure to join our Facebook group to stay up to date with all of our events and activities (https://tinyurl.com/MAPKUFfb). If you have any questions or suggestions, please reach out to us (mapkuf@gmail.com). We look forward to hearing from you! Kind regards. Melissa Scobellmapkuf@gmail.com410-961-0952

<img src="https://res.cloudinary.com/hxn9dbuhd/image/upload/v1662321785/v5mlrv7ewb4sn6ugiugy.png" style="width:531px;position:relative;cursor:pointer;padding:0px 1px;user-select:none;box-sizing:inherit;max-width:100%" /> The Maryland Alliance of PKU Families was started in 1994 by parents of children that have PKU to promote the health and well-being of persons with PKU. The inaugural event, Camp Huber for people with PKU and their families/support persons, combined educational experiences with networking and entertainment, where PKU food was on the menu and no explanations of diet were needed. Over the years, MAPKUF expanded their goals and reach, now hosting several events throughout the year, and engaging about 100 people from across the Mid-Atlantic (and sometimes further). MAPKUF works to make camp, and the other events, affordable to all families that already struggle with high costs of insurance, medical food, formula, and medication, to ensure they are part of the MAPKUF community. We are working on growing and expanding our initiatives, but we need support both financially as well as from members like you committed to helping us grow! Thank you for considering joining our ranks! Please see the chart below as reference to where you money will be used:  <img src="https://res.cloudinary.com/hxn9dbuhd/image/upload/v1662322073/xdq5mb8ceji8cjrzrmrn.png" style="width:481px;position:relative;cursor:pointer;padding:0px 1px;user-select:none;box-sizing:inherit;max-width:100%" />Please see a more detailed budget here:<a href="https://docs.google.com/spreadsheets/d/1YUOsKyvAcrwq9gJpVwQslvj0f7x4uoE4/edit?usp=sharing&amp;ouid=106645138876394246060&amp;rtpof=true&amp;sd=true">https://docs.google.com/spreadsheets/d/1YUOsKyvAcrwq9gJpVwQslvj0f7x4uoE4/edit?usp=sharing&amp;ouid=106645138876394246060&amp;rtpof=true&amp;sd=true</a> Other ways to donate: If you would like to donate by check, please send it addressed to MAPKUF to: 5925 Florey RoadHanover, MD 21076 Or send us your donation through paypal: <a href="https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&amp;hosted_button_id=3524FDD6HRWUE&amp;source=url">https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&amp;hosted_button_id=3524FDD6HRWUE&amp;source=url</a>. When donating via these by mail or paypal, please also email <a href="mailto:mapkuf@gmail.com">mapkuf@gmail.com</a> so we can send a tax receipt or include your best contact information with your payment. MAPKUF is a non-profit 501c and all donations are tax deductible.

Alliance of PKU Families

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