Soft Bones

Southeast Region Zoom Meeting and Chat - April 26, 2025
2025-04-26 15:00 - 16:00 (America/New_York) | Online
Do you live in Alabama, Georgia, Florida, Mississippi, North Carolina, South Carolina, or Tennessee?

Join Region Leads Blynda K., Scott G., and Tess O., for a Southeast Region Zoom Meeting on Saturday, April 26th at 3 PM Eastern. Meet your newest Region Lead, Tess O., and connect with others in your region. Don’t miss out!

Please register HERE.

If you have any questions, please reach out to Cindy Reasor (Cindy@SoftBones.org).

Join Us for an In-Person Midwest 1 Region Meeting - April 27, 2025
2025-04-27 10:00 - 13:00 (America/Chicago)
Do you live in Illinois, Indiana, Iowa, Minnesota, or Wisconsin?
Join Midwest 1 Region Lead, Jan R. for a luncheon on Sunday, April 27, 2025, from 10 AM – 1 PM Central in Coralville, IA. All Midwest 1 Region members and families are welcome. Connect and chat with others from your region. Lunch will be served.
Registration is required and will close on April 12th. Please register HERE.
If you have any questions, please reach out to Cindy@SoftBones.org.

Join Us for a Northwest Region Zoom Chat - May 8, 2025
2025-05-08 18:00 - 19:00 (America/Denver)
Do you live in Alaska, Idaho, Montana, Northern California, Oregon, or Washington?

Join Region Leads Scarlett P. and Hayley T. for a Zoom Chat on May 8th at 6 PM Pacific/9 PM Eastern. This is a great opportunity to meet your newest Region Lead, Scarlett, and catch up with fellow members from your region. We’d love to see you there!

Registration is required. Please register HERE.

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease. If you have any questions, please reach out to Cindy@SoftBones.org.

Join Us for an In-Person Southeast Region Meeting - May 10, 2025
2025-05-10 10:30 - 13:30 (America/Chicago)
Do you live in Alabama, Florida, Georgia, Mississippi, North Carolina, South Carolina, or Tennessee?

Join us in Nashville, TN!

Southeast Region Leads, Blynda K., Scott G., and Tess O., have planned a lunch get-together on May 10, 2025, 10:30 AM-1:30 PM Central. All Southeast Region members and families are welcome to learn more about your local HPP support system and connect with fellow HPP families!

Registration is required and will close on April 26th, 2025. Please register HERE.

If you have any questions, please reach out to Cindy@SoftBones.org.

3rd Annual Denim and Diamonds Fundraiser - REGISTRATION IS NOW OPEN
2025-05-17 17:30 - 21:30 (America/New_York) | Harvest Hall at Alstede Farms, 100 Rte 24, Chester, 07930, United States
Registration for the 3rd Annual Denim and Diamonds is now open!

Get your cowboy boots and dance for a great cause.

There will be:
🤠Live music by Glenn Roberts Cranked Up Country Band
🍖 BBQ spread by Famous Dave’s
🍸 Beer, wine, and specialty cocktails included
💎Silent Auction
🔥S’mores and campfire (weather permitting)
🤩Sponsorship opportunities to get your business out there

Date: Saturday, May 17, 2025
Location: Alstede Farms, 100 Rte 24, Chester, NJ 07930
Time: 5:30 PM – 9:30 PM

Register HERE.

Can’t attend but still want to donate to Soft Bones? Donate an auctionable item. Contact Jessica at Jessica@softbones.org for more information.

HPP AND ME Live Zoom Chat - May 20, 2025
2025-05-20 20:00 - 21:00 (America/New_York) | Online
Register for your spot today!

Join us on May 20, 2025, at 8 PM Eastern for an HPP AND ME Zoom Chat. Connect with others and share your experiences with HPP. Registration is required. We hope to see you there!
Click here to register.

Join Us for an In-Person Midwest 1 Region Meeting - May 25, 2025
2025-05-25 10:00 - 13:00 (America/Chicago)
Do you live in Illinois, Indiana, Iowa, Minnesota, or Wisconsin?

Join us in Maple Grove/Anoka, MN!

Join Region Lead, Jan R. for a Midwest 1 Region Luncheon on May 25, 2025, from 10 AM-1 PM Central Time. Come meet others from your region. Lunch will be served.

Registration is required and will close on May 11th. Please register HERE.

This event is sponsored in part by Alexion, AstraZeneca. If you have any questions, please reach out to Cindy@SoftBones.org.

Teen Advisory Council Event - Are you being influenced or are you an influencer?
2025-06-03 20:00 - 21:00 (America/New_York) | Online
Calling all Teen Advisory Council (TAC) teens!

Did you know that in 2023, there were over 10.2 million influencers on Instagram? From fashion and fitness to makeup tutorials and historical facts, these voices shape the world one post at a time.

You can be an influencer too, especially when it comes to raising awareness of rare diseases like hypophosphatasia (HPP). Whether you share your story, call for policy changes, or educate others, you have the power to inspire and inform. 📢

We are excited to have communications expert Meghan Dillon, Vice President of Digital from Green Room Communications, at our next TAC meeting. Megan will share tips and tricks on how you can be an influencer and make a real impact.

Join us for our next TAC meeting on Tuesday, June 3, at 8:00 PM Eastern. Check your email to register.

Interested in joining TAC? Please contact us HERE for more information. TAC is sponsored in part by Alexion, AstraZeneca Rare Disease.

Join Us for an In-Person Northwest Region Meeting - June 7, 2025
2025-06-07 11:00 - 13:00 (America/Denver)
Do you live in Alaska, Idaho, Montana, Northern California, Oregon, or Washington?

Join us in Grass Valley, CA!

Northwest Region Leads, Scarlett P. and Haley T., will host an in-person luncheon on June 7th from 11 AM – 1 PM Pacific Time. Meet your newest Region Lead, Scarlett, and connect with others in your region. OneSource Case Manager, Lindsay Steele, will be there to field questions, engage in conversations, and more. All Northwest Region members and families are welcome. Lunch will be provided.

Registration is required and will close on May 24, 2025. Register HERE.

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease. If you have any questions, please reach out to Cindy@SoftBones.org.

STRENSIQ Perspectives - June 10, 2025
2025-06-10 19:00 - 21:00 (America/New_York) | Online
Gain a new perspective on treatment!

Join Alexion, AstraZeneca on June 10th at 7:00 PM Eastern for a virtual meeting on STRENSIQ. Attendees will have the opportunity to learn from an experienced HPP healthcare provider, HPP patient or caregiver, and OneSourceTM.

Registration before the event is required to receive a link to the webinar. Register HERE.

HPP AND ME Live Zoom Chat - June 19, 2025
2025-06-19 13:00 - 14:00 (America/New_York) | Online
Register for your spot today!

Join us on June 19, 2025, at 1 PM Eastern for an HPP AND ME Zoom Chat. Connect with others and share your experiences with HPP. Registration is required. We hope to see you there!
Click here to register.

2025 Soft Bones National Patient Meeting
2025-07-18 17:30 - 2025-07-19 17:00 (America/Halifax) | Great Wolf Lodge (Williamsburg, VA), 549 E Rochambeau Dr, Williamsburg, VA, 23188, United States
Join us for our 2025 Soft Bones National Patient Meeting on July 18th–July 19th, 2025 in Williamsburg, VA. This important event will bring together HPP community members to gain valuable knowledge while connecting with others. There is no cost to attend the meeting.

Agenda
Check out the AGENDA for an overview of the planned events and speakers.

Meeting Venue
Great Wolf Lodge (Williamsburg, VA)
Address: 549 E Rochambeau Dr, Williamsburg, VA 23188
Phone: (800) 551-9653

Travel Grant Reimbursement Information
Soft Bones offers a limited number of travel grant reimbursements for those who need to subsidize the cost of transportation to the meeting. Refer to the travel grant policy for details. Please note that the foundation is a 501(c)(3) nonprofit organization that funds events such as this through ongoing fundraising efforts. We ask that when requesting a travel grant, you use your best judgment so that funds can be disbursed based on need. Donations in any amount to help are appreciated. Be sure to answer the question regarding a travel grant during registration to indicate interest. Reimbursements are available for U.S. residents.

Contact Us
Registration is now closed. Please contact PatientMeeting@SoftBones.org for more information.

This meeting is sponsored in part by:
Headline Sponsor:

Champion Sponsor:

Advocate Sponsor:

Community Builder:

HPP Empowered: July 23, 2025 at 7:00 PM Eastern
2025-07-23 19:00 - 20:00 (America/New_York) | Online
Have you or a loved one been diagnosed with hypophosphatasia (HPP)?
Join Alexion Pharmaceuticals, Inc. as they host their HPP Empowered virtual educational event on Wednesday, July 23, 2025, at 7:00 PM ET.
Register HERE.

Presented by Alexion AstraZeneca Rare Disease.

HPP AND ME Live Zoom Chat - July 29, 2025
2025-07-29 20:00 - 21:00 (America/New_York) | Online
Register for your spot today!

Join us on July 29, 2025, at 8 PM Eastern for an HPP AND ME Zoom Chat. Connect with others and share your experiences with HPP. Registration is required. We hope to see you there!
Click here to register.

Join Us for a South Central Region Zoom Chat - July 31, 2025
2025-07-31 19:00 - 20:00 (America/Chicago)
Do you live in Louisiana or Texas?

Join South Central Region Leads Amedie P., Cami R. and Cassandra S. for a Zoom Chat on July 31, 2025 at 7 PM Central. Meet your newest Region Lead, Amedie, and connect with others in your region.

Registration is required. Please register HERE.

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease. If you have any questions, please reach out to Cindy@SoftBones.org.

New Patient Orientation Meeting - August 11, 2025
2025-08-11 13:00 - 14:00 (America/New_York) | Online
Calling all new HPP patients and individuals new to Soft Bones. Please join us for our New Patient Orientation on August 11th at 1 PM Eastern for a virtual Zoom meeting.
This is an opportunity to meet some of our team, hear about our HPP resources, learn about our programs, and much more!

Please contact us HERE, to register.

STRENSIQ Perspectives - August 20, 2025
2025-08-20 19:00 - 21:00 (America/New_York) | Online
Gain a new perspective on treatment!

Join Alexion, AstraZeneca on August 20th at 7:00 PM Eastern for a virtual meeting on STRENSIQ. Attendees will have the opportunity to learn from an experienced HPP healthcare provider, HPP patient or caregiver, and OneSourceTM.

Registration before the event is required to receive a link to the webinar. Register HERE.

HPP AND ME Live Zoom Chat - August 28, 2025
2025-08-28 13:00 - 14:00 (America/New_York) | Online
Register for your spot today!

Join us on August 28, 2025, at 1 PM Eastern for an HPP AND ME Zoom Chat. Connect with others and share your experiences with HPP. Registration is required. We hope to see you there!
Click here to register.

Join Us for an In-Person Southeast Region Meeting - August 30, 2025
2025-08-30 10:00 - 14:00 (America/New_York)
Calling all HPP members from Alabama, Florida, Georgia, Mississippi, North Carolina, South Carolina, and Tennessee.

Meet us in Kissimmee, FL!

Join Southeast Region Lead, Scott G., for an in-person meeting on Saturday, August 30, 2025, from 10 AM – 2 PM Eastern. Connect with fellow HPP members, share stories, and learn more about our programs. Deana Brown, OneSource Case Manager, will be available to answer questions and engage in conversations. Lunch will be provided.

Registration is required and will close on August 16, 2025. Register HERE.

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease. If you have any questions, please reach out to Cindy@SoftBones.org.

Join Us for a Northeast Zoom Chat - September 8, 2025 at 7 PM Eastern
2025-09-08 19:00 - 20:00 (America/Halifax)
Do you live in Connecticut, DC, Delaware, Maine, Maryland, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Vermont, or Virginia?
Join Northeast Region Leads for a Zoom Chat on Monday, September 8th at 7 PM Eastern. This is a great opportunity to meet and catch up with fellow members from your region. We hope to see you there!
Registration is required. Please register below.
The Region Lead Program is sponsored in part by Alexion, AstraZeneca Rare Disease.

HPP AND ME Live Zoom Chat - September 23, 2025
2025-09-23 20:00 - 21:00 (America/Halifax) | Online
Register for your spot today!

Join us on September 23, 2025, at 8 PM Eastern for an HPP AND ME Zoom Chat. Connect with others and share your experiences with HPP. Registration is required. We hope to see you there!
Click here to register.

HPP Empowered: September 24, 2025 at 7:00 PM Eastern
2025-09-24 19:00 - 20:00 (America/Halifax) | Online
Have you or a loved one been diagnosed with hypophosphatasia (HPP)?
Join Alexion Pharmaceuticals, Inc. as they host their HPP Empowered virtual educational event on Wednesday, September 24, 2025, at 7:00 PM ET.
Register HERE.

Presented by Alexion AstraZeneca Rare Disease.

17th Annual Golf Classic and 2nd Annual Pickleball Tournament- Day of Play
2025-09-29 10:00 - 18:00 (America/Halifax) | Somerset Hills Country Club, 180 Mine Mount Rd, Bernardsville, New Jersey, 07924
Registration for the 17th Annual Soft Bones Golf Classic and 2nd Annual Pickleball Classic is now closed. If you are attending golf or pickleball, below, you will find the day of play details. Please contact Jessica at Jessica@SoftBones.org for any questions or concerns.

Golf Day of Play: HERE
Pickleball Day of Play: HERE

Whether you’re teeing off, playing pickleball, or cheering from the sidelines, your presence and generosity amplify hope for families battling HPP.
Thank you to Atlantic Health System for being our tournament sponsor.

2025 Cannonball 5K Run, Roll, or Stroll
2025-10-01 00:00 - 2025-10-31 00:00 (America/Halifax) | Online
Ready! Set! Go!
Registration is now open for the 4th Annual Cannonball 5K Run, Roll or Stroll. From now until October 31st, challenge yourself and friends to finish a 5K! Complete this in a single day or pace yourself to hit your goal. Gather your friends and family to participate locally or virtually.

Sign up directly: HERE

Did you know you can donate on behalf of someone running, rolling, or strolling? Support them during their challenge! Visit our Cannonball 5K page to learn how you can participate and support us!

This event is sponsored in part by Alexion, AstraZeneca Rare Disease

STRENSIQ Perspectives - October 23, 2025
2025-10-23 19:00 - 21:00 (America/New_York) | Online
Gain a new perspective on treatment!

Join Alexion, AstraZeneca Rare Disease on October 23rd at 7:00 PM Eastern for a virtual meeting on STRENSIQ. Attendees will have the opportunity to learn from an experienced HPP healthcare provider, HPP patient or caregiver, and OneSourceTM.

Registration before the event is required to receive a link to the webinar. Register HERE.

Join Us for an In-Person Midwest 1 and Midwest 2 Region Meeting - October 25, 2025
2025-10-25 11:00 - 13:00 (America/New_York)
Do you live in Illinois, Indiana, Iowa, Kentucky, Michigan, Minnesota, Ohio, West Virginia, or Wisconsin?

Join us in Madison, IN!

Join Midwest 1 Region Lead, Cindy R., and Midwest 2 Region Lead, Jennifer W., for a luncheon on October 25, 2025, from 11 AM – 1 PM Eastern. Connect with patients from your region and neighboring states, too! Lunch will be provided.

Registration is required and will close on October 19th. Please register HERE.

Following the meeting, attendees can participate in our Annual Cannonball 5K Run, Roll, or Stroll. Learn how you can participate HERE.

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease. If you have any questions, please reach out to Cindy@SoftBones.org.

Join Us for an In-Person Southwest Region Meeting - October 25, 2025
2025-10-25 11:00 - 14:00 (America/Denver)
Calling all HPP families from Arizona, Hawaii, Nevada, New Mexico, Southern California, and Utah.

Meet us in Tempe, AZ!

Join Southwest Region Leads for a luncheon on Saturday, October 25, 2025, from 11 AM – 2 PM MST.

All Southwest Region members and families are welcome. Dr. Pamela Smith from Phoenix Children’s Hospital will be presenting. OneSource Case Managers, Joan Gustin and Angela Corso, will be there to chat and field questions. Light lunch/finger foods and soft drinks will be served. We hope to see you there!

Registration is required and will close on October 11, 2025. Please register HERE.

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease. If you have any questions, please reach out to Cindy@SoftBones.org.

Join Us for a In-Person Midwest 1 Region Meeting - October 25, 2025
2025-10-25 11:30 - 14:00 (America/New_York)
Do you live in Illinois, Indiana, Iowa, Minnesota, or Wisconsin?

Join us in Madison, WI!

Region Leads Gerald G. and Jan R. will be hosting a luncheon on October 25, 2025 from 11:30 AM – 2:00 PM Central. All Midwest 1 Region members and families are welcome to learn more about your local HPP support system and connect with fellow HPP families. Lunch will be provided.

Registration is required and will close on October 19th. Please register HERE.

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease. If you have any questions, please reach out to Cindy@SoftBones.org.

World HPP Day - October 30, 2025
2025-10-30
We are getting ready for World HPP Day, recognized on October 30th. This is a time for the HPP community to come together and raise awareness about hypophosphatasia (HPP).
This year, we celebrate the progress we’ve made, but recognize how far we still have to go in understanding the impact of low alkaline phosphatase (ALP) in the body and how it can go undetected for many years.

When something is glaringly present and not addressed, we say there’s an “elephant in the room.” However, with our HPP mascot, the HIPPO, it’s time to acknowledge the “HIPPO in the room.”

Visit our page to learn how you can get involved HERE.

Together, we can raise awareness and identify the Hippo in the room!

HPP AND ME Live Zoom Chat - October 30, 2025
2025-10-30 13:00 - 14:00 (America/Halifax) | Online
Register for your spot today!

Join us on October 30, 2025, at 1 PM Eastern for an HPP AND ME Zoom Chat. Connect with others and share your experiences with HPP. Registration is required. We hope to see you there!
Click here to register.
