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.

Regular Pricing

General admission

Day Camp - Saturday Only 3 and Under

General Admission - Individual with PKU or IEM

Day Camp - Saturday Only General Admission

Day Camp - Saturday Only PKU or IEM Individual

If you would like to donate to others in need, please purchase this ticket. Thank you for supporting our mission!

Donation

We look forward to hosting Camp Huber 2025, June 6-9th! Registration arrival times will be Friday June 6th between 4pm and 6pm and Saturday June 7th between 7am and 9am. We appreciate that families are traveling a great distance to come to camp and not arriving during one of these time slots may not be possible for an unforeseeable circumstance (traffic, etc), but we appreciate if you aim for arrival during one of these time slots to help facilitate the check-in process. Thank you for your help! Camp will be held at Innabah Camp and Retreat Center: 712 Pughtown Rd Spring City, PA 19475 Some details about Camp Huber: * Where? Innabah Camp and Retreat Center* When? June 6-9th* Who?  Individuals with PKU and related IEMS are welcome to join us with their families!* Why? Our goal is for individuals with protein-based inborn errors of metabolism (IEMs) to remain on diet for life, foster a community that transcends one weekend, and grow in capacity for our IEM members to advocate for their medical needs.* Questions? email <a href="mailto:camphuber94@gmail.com" style="text-decoration-color:initial;user-select:auto;box-sizing:inherit;color:inherit">camphuber94@gmail.com</a> This year camp will cost $250 per person. If this is a barrier, please fill out this form: <a href="https://forms.gle/jP6WXeZGzUQ1khvz7" style="text-decoration:none;user-select:auto;box-sizing:inherit"><span fr-original-style="font-size:11pt;font-family:Arial,sans-serif;color:#000000;background-color:transparent;font-weight:400;font-style:normal;font-variant:normal;text-decoration:none;vertical-align:baseline;white-space:pre;white-space:pre-wrap;" style="font-size:11pt;font-family:Arial, sans-serif;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"> <span fr-original-style="font-size:11pt;font-family:Arial,sans-serif;color:#1155cc;background-color:transparent;font-weight:400;font-style:normal;font-variant:normal;text-decoration:underline;-webkit-text-decoration-skip:none;text-decoration-skip-ink:none;vertical-align:baseline;white-space:pre;white-space:pre-wrap;" style="font-size:11pt;font-family:Arial, sans-serif;color:rgb(17, 85, 204);background-color:transparent;font-weight:400;font-style:normal;font-variant:normal;text-decoration:underline;text-decoration-skip-ink:none;vertical-align:baseline;white-space:pre-wrap;box-sizing:inherit">https://forms.gle/jP6WXeZGzUQ1khvz7</a> Our mission for Camp Huber is to provide an affordable camp for those who have a family member with PKU (or an allied disorder). We know that formula, food, and medicine can be a financial strain on our families throughout the year and it is our passion to support our families with this family camp and to keep Camp Huber affordable to all. We never want the cost of camp to be a barrier to any family to attend and would like you to reach out if this is the case for a sponsorship.  If you would like to aid another individual in attending camp for a reduced fee we will be able to send a tax id number for your tax records. Maryland Alliance of PKU Families is a 501c non-profit organization. All fees are due before camp arrival. You are able to pay via this registration site (if you have any problems please reach out immediately to <a href="mailto:mapkuf@gmail.com," style="text-decoration-color:initial;user-select:auto;box-sizing:inherit">mapkuf@gmail.com </a> or Zeffy itself, Zeffy has an amazing customer service team). We look forward to seeing you at camp!

Hello <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 <span contenteditable="false" data-custom-variable="{{lastname}}" 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">Last name, Thank you for registering for Camp Huber 2025 June 6-9th! We cannot wait to see you at Camp! Please bookmark our website for more information and updates:<a href="https://alliancepkufamilies.org/" style="text-decoration-color:initial;user-select:auto;box-sizing:inherit">https://alliancepkufamilies.org/</a>. We also will be using an application called <a href="https://band.us/en" style="text-decoration-color:initial;user-select:auto;box-sizing:inherit" target="_self">Band </a>during camp this year. Please follow this link to sign up:<a href="https://band.us/n/a8afA6s0G6e7a" style="text-decoration-color:initial;user-select:auto;box-sizing:inherit">https://band.us/n/a8afA6s0G6e7a</a>. Band will be the best way to keep up to date with news before, during, and after camp! Only those who register will have access. If you have any questions, please do not hesitate to reach out! We look forward to another successful Camp Huber! Kind regards, Melissa Scobell Tobiaszmapkuf@gmail.com410-961-0952

We look forward to hosting Camp Huber 2025, June 6-9th! Registration arrival times will be Friday June 6th between 4pm and 6pm and Saturday June 7th between 7am and 9am. We appreciate that families are traveling a great distance to come to camp and not arriving during one of these time slots may not be possible for an unforeseeable circumstance (traffic, etc), but we appreciate if you aim for arrival during one of these time slots to help facilitate the check-in process. Thank you for your help! Camp will be held at Innabah Camp and Retreat Center: 712 Pughtown Rd Spring City, PA 19475 Some details about Camp Huber: * Where? Innabah Camp and Retreat Center* When? June 6-9th* Who?  Individuals with PKU and related IEMS are welcome to join us with their families!* Why? Our goal is for individuals with protein-based inborn errors of metabolism (IEMs) to remain on diet for life, foster a community that transcends one weekend, and grow in capacity for our IEM members to advocate for their medical needs.* Questions? email <a href="mailto:camphuber94@gmail.com">camphuber94@gmail.com</a> This year camp will cost $250 per person. If this is a barrier, please fill out this form: <a href="https://forms.gle/jP6WXeZGzUQ1khvz7"> https://forms.gle/jP6WXeZGzUQ1khvz7</a> Our mission for Camp Huber is to provide an affordable camp for those who have a family member with PKU (or an allied disorder). We know that formula, food, and medicine can be a financial strain on our families throughout the year and it is our passion to support our families with this family camp and to keep Camp Huber affordable to all. We never want the cost of camp to be a barrier to any family to attend and would like you to reach out if this is the case for a sponsorship.  If you would like to aid another individual in attending camp for a reduced fee we will be able to send a tax id number for your tax records. Maryland Alliance of PKU Families is a 501c non-profit organization. All fees are due before camp arrival. You are able to pay via this registration site (if you have any problems please reach out immediately to <a href="mailto:mapkuf@gmail.com,">mapkuf@gmail.com </a> or Zeffy itself, Zeffy has an amazing customer service team). We look forward to seeing you at camp!

Alliance of PKU Families

Camp Huber 2025

712 Pughtown Rd Spring City

General admission

$250

Day Camp - Saturday Only 3 and Under

Free

General Admission - Individual with PKU or IEM

Free

Day Camp - Saturday Only General Admission

$100

Day Camp - Saturday Only PKU or IEM Individual

Free

Donation

$50

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