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.

Player

Individual with PKU

Please register your child if they are 3 and under, they are free :).

3 and Under

The Alliance of PKU Families (APF) is a community driven organization supporting the welfare of individuals affected by phenylketonuria (PKU) in their daily life and their families through health advocacy, promoting education, building support on navigating a restrictive diet and supplemental therapies, and fostering a nurturing environment for community stakeholders in MD, VA, WVA, DC, and PA.   Nutrition is the cornerstone of treatment for PKU to prevent more severe and chronic disability.  In addition to several rare and serious disorders, PKU is diagnosed today on a mass population basis thanks to the newborn screen.  APF, in partnership with Mount St. Joseph High School's amazing Pickleball Team, cordially invite you to experience the joy of pickleball in support of the APF mission for healthy living, through healthy activities, and engage with this spirited community.  Grab your pickleball paddle and head to Dill Dinkers Columbia on September 21, 2024 from 1:30 to 4:00pm!   Let's hit the courts and exercise gratitude, September celebrates newborn screening awareness month.  You do not want to miss this <span fr-original-style="font-size: 14px; font-family: Helvetica; color: rgb(0, 0, 0); background-color: transparent; font-weight: 400; font-style: normal; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;" style="font-size:14px;font-family:Helvetica;color:rgb(0, 0, 0);background-color:transparent;font-weight:400;font-style:normal;font-variant:normal;text-decoration:none;vertical-align:baseline;white-space:pre-wrap;box-sizing:inherit">smashing event! All ages and levels welcomed. Instruction, light snacks, and equipment provided.  More details to follow, PKU thanks you for your support!<span fr-original-style="font-size: 11pt; font-family: Helvetica; color: rgb(0, 0, 0); background-color: transparent; font-weight: 400; font-style: normal; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;" style="font-size:11pt;font-family:Helvetica;color:rgb(0, 0, 0);background-color:transparent;font-weight:400;font-style:normal;font-variant:normal;text-decoration:none;vertical-align:baseline;white-space:pre-wrap;box-sizing:inherit">

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 from the bottom of our hearts for registering for our event and supporting our cause. This 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! Melissa Scobellmapkuf@gmail.com

The Alliance of PKU Families (APF) is a community driven organization supporting the welfare of individuals affected by phenylketonuria (PKU) in their daily life and their families through health advocacy, promoting education, building support on navigating a restrictive diet and supplemental therapies, and fostering a nurturing environment for community stakeholders in MD, VA, WVA, DC, and PA.   Nutrition is the cornerstone of treatment for PKU to prevent more severe and chronic disability.  In addition to several rare and serious disorders, PKU is diagnosed today on a mass population basis thanks to the newborn screen.  APF, in partnership with Mount St. Joseph High School's amazing Pickleball Team, cordially invite you to experience the joy of pickleball in support of the APF mission for healthy living, through healthy activities, and engage with this spirited community.  Grab your pickleball paddle and head to Dill Dinkers Columbia on September 21, 2024 from 1:30 to 4:00pm!   Let's hit the courts and exercise gratitude, September celebrates newborn screening awareness month.  You do not want to miss this smashing event! All ages and levels welcomed. Instruction, light snacks, and equipment provided.  More details to follow, PKU thanks you for your support!

Alliance of PKU Families

Add a donation for Alliance of PKU Families

PKU Hits the Court

9179 Red Branch Rd

Player

$20

Individual with PKU

Free

3 and Under

Free