Soft Bones

Midwest 2 Region Zoom Meeting and Chat
2024-10-03 19:30 - 20:30 (America/Los_Angeles) | Online
Do you live in Kentucky, Michigan, Ohio, or West Virginia?

Join Region Leads, Nichole Macknight and Sharon Talkington for a Midwest 2 Zoom Chat on Thursday, October 3rd at 7:30 PM Eastern. Connect with fellow HPP members in your region.

Registration is required. Please register HERE:

If you have any questions, please reach out to Nichole Macknight (nichole@softbones.org), Sharon Talkington (sharon@softbones.org), or Cindy Reasor (Cindy@SoftBones.org).

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease.

2024 Cannonball 5K Run, Roll, or Stroll
2024-09-29 00:00 - 2024-10-31 00:00 (America/New_York) | Online
It’s time to Run, Roll, or Stroll!
Registration for Soft Bones 3rd annual Cannonball 5K Run, Roll or Stroll is NOW LIVE! Now until October 31st, challenge yourself to finish a 5K! Complete the 5K in a single day or pace yourself to hit your goal over the course of the month. 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 meeting is sponsored in part by Alexion, AstraZeneca Rare Disease

HPP Empowered: September 28, 2024 at 1:00 PM ET
2024-09-28 19:00 - 20:00 (America/New_York) | Mitchell’s Steakhouse, 1408 Polaris Pkwy, Columbus, OH, 43240
Register Today For This Informative Webinar.
Have you or a loved one been diagnosed with hypophosphatasia (HPP)?
Join Alexion Pharmaceuticals, Inc. as they host a LIVE HPP Empowered in-person educational event on Saturday, September 28th, 2024, at 1:00 PM ET.

Location: Mitchell’s Steakhouse
1408 Polaris Pkwy, Columbus, OH 43240

Join HERE.

Presented by Alexion AstraZeneca Rare Disease.

HPP AND ME Live Zoom Chat
2024-09-24 15:00 - 16:00 (America/New_York) | Online
Register for your spot today!

Join us on September 24th at 3 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 the 16th Annual Golf Classic 2024 and 1st Annual Pickleball Classic
2024-09-23 10:00 - 17:00 (Asia/Kolkata) | Somerset Hills Country Club, 180 Mine Mount Rd, Bernardsville, New Jersey, 07924
Join us for our 16th Annual Soft Bones Golf Classic to be held on Monday, September 23rd, 2024. This annual fundraiser supports Roger’s grandson Cannon Sittig, who lives with HPP (pictured in the 4th photo) along with his daughter, Soft Bones Chairman of the Board and Founder Deborah Nettune Fowler. Also this year, Somerset Hills has added pickleball courts to their facilities and we are excited to announce our 1st Pickleball Classic will take place on the same day.

Soft Bones 16th Annual Golf Classic
Golfers will enjoy a full day of play on a renowned course in the best ball or scramble format. There will be numerous opportunities to earn prizes for individuals and groups. Participants will have a delicious lunch before teeing off. Cocktails, drinks, and snacks will be available throughout the day. Gift certificates for dinner are included to end the day’s outing.
Thank you to Atlantic Health System for continuing to be our tournament sponsor for this important event. We hope you will join us for a day of top-notch golf to support this worthy cause.

Golf Event Schedule:
10:00 AM Registration/Driving Range open
10:30 AM Luncheon Begins
11:50 AM Welcome Ceremony (parking lot near golf cart launch)
12:00 PM Shotgun Start

Please note that this event is held rain or shine.

Soft Bones 1st Annual Pickleball Classic
As pickleball takes the country by storm, we invite pickleball enthusiasts to come out and support Soft Bones. There will be a 30 minute warm up with a pro before we start the tournament. Winner of the pickleball tournament will receive a prize. Light courtside refreshments will be served. After play, guests can enjoy a BBQ lunch. The Pro Shop will be open to all. Please bring your own paddle. Balls will be provided. If you do not have your own, there will be paddles available to use.

Pickleball Event Schedule:
9:00 AM Registration
9:30 AM Pickleball Warm Up with a Pro
10:00 AM Pickleball Tournament
11:30 AM Lunch

Register now: https://app.donorview.com/l9pWP

To register without incurring a fee, you can sign up online and mail a check, pay by Venmo at @Soft-Bones (last four digits 1081), or through Zelle at Info@SoftBones.org. In the memo section, please include your full name and write “Soft Bones 2024 Golf Classic”.

Not a golfer or pickleball player? Consider one of our sponsorships to show your support or to highlight your business.

HPP Empowered: September 19, 2024 at 7:00 PM ET
2024-09-19 19:00 - 20:00 (America/New_York) | Online
Register Today For This Informative Webinar.
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 Thursday, September 19th, 2024, at 7:00 PM ET.
Join HERE.

Presented by Alexion AstraZeneca Rare Disease.

Appy Hour
2024-09-05 15:00 - 16:00 (America/New_York) | Online
The myHPP app was developed by patients and physicians to transform patient care and inform hypophosphatasia research. It puts patients in charge of tracking their health and makes them a valuable partner in research for better HPP treatment and care.

Come join us on September 5, 2024 at 3 PM EDT, over Zoom, to learn more about myHPP and how to navigate the app. Learn from tech savvy patient users and feel free to ask questions along the way. Join us in taking actionable steps to transform healthcare. Download the app in the Apple Store or Google Play Store today!

Registration is required. Please register here.

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

HPP AND ME Live Zoom Chat
2024-08-29 20:00 - 21:00 (America/New_York) | Online
Register for your spot today!

Join us on August 29th 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.

Northeast Region Zoom Meeting and Chat
2024-08-22 19:30 - 20:30 (America/Los_Angeles) | Online
Do you live in Connecticut, DC, Delaware, Maine, Maryland, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Vermont, or Virginia?

Join Region Leads, Judith Harris and Chris Denune, on Thursday August 22, 2024 at 7:30 PM Eastern for a Zoom Chat. Come learn more about our Northeast in-person meeting in October and connect with fellow HPP members.

Registration is required. Please register HERE:

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

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease.

HPP Empowered: August 20, 2024 at 7:00 PM (Eastern)
2024-08-20 19:00 (America/New_York) | Online
Register Today For This Informative Webinar.
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 August 20th at 7:00 PM Eastern. Learn more about the event and register below. Register now!
Join here: https://hypophosphatasia.com/events

Presented by Alexion AstraZeneca Rare Disease.

Midwest 1 Region Patient Meeting
2024-08-17 12:00 - 14:00 (America/Chicago) | Blackberry Trails Park, 2535 Caliendo Cir, Montgomery, IL, United States
Midwest 1 Region Meet-Up Opportunity
Do you live in Illinois, Indiana, Iowa, Minnesota, or Wisconsin?

Join Region Lead, Nicole Belting, on Saturday August 17, 2024 at 12 PM Central for a meet up in Illinois. We will meet at Blackberry Trails Park for lunch. A OneSource Case Manager will be there to field questions, engage in conversations, and more. Come outside and enjoy nature. We hope to see you there! This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease.

Date: Saturday August 17, 2024
Time: 12 PM
Address: Blackberry Trails Park (Note: plug in 2535 Caliendo Cir, Montgomery, IL 60538 at the corner of Griffin Dr. & William Dr.)

Registration is required and will close on August 3, 2024. Please register HERE.

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

Appy Hour
2024-08-15 20:00 - 21:00 (America/New_York) | Online
The myHPP app was developed by patients and physicians to transform patient care and inform hypophosphatasia research. It puts patients in charge of tracking their health and makes them a valuable partner in research for better HPP treatment and care.

Come join us on August 15th at 8 PM Eastern, over Zoom, to learn more about myHPP and how to navigate the app. Learn from tech savvy patient users and feel free to ask questions along the way. Join us in taking actionable steps to transform healthcare. Download the app in the Apple Store or Google Play Store today!

Registration is required. Please register here.

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

Appy Hour
2024-08-10 11:00 - 12:00 (America/New_York) | Online
The myHPP app was developed by patients and physicians to transform patient care and inform hypophosphatasia research. It puts patients in charge of tracking their health and makes them a valuable partner in research for better HPP treatment and care.

Come join us on August 10th at 11 AM Eastern, over Zoom, to learn more about myHPP and how to navigate the app. Learn from tech savvy patient users and feel free to ask questions along the way. Join us in taking actionable steps to transform healthcare. Download the app in the Apple Store or Google Play Store today!

Registration is required. Please register here.

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

Appy Hour
2024-07-30 20:00 - 21:00 (America/New_York) | Online
The myHPP app was developed by patients and physicians to transform patient care and inform hypophosphatasia research. It puts patients in charge of tracking their health and makes them a valuable partner in research for better HPP treatment and care.

Come join us on July 30th at 8 PM Eastern, over Zoom, to learn more about myHPP and how to navigate the app. Learn from tech savvy patient users and feel free to ask questions along the way. Join us in taking actionable steps to transform healthcare. Download the app in the Apple Store or Google Play Store today!

Registration is required. Please register here.

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

Northwest Region Zoom Meeting and Chat
2024-07-25 19:00 - 20:00 (America/Los_Angeles) | Online
Do you live in Alaska, Idaho, Northern California, Montana, Oregon or Washington?

Join Region Leads, Hayley Thornton and Ann Haak on July 25th at 7:00PM Pacific. All who register and attend will be in a drawing for a $20 Starbucks gift card. Come meet your newest Region Lead, Hayley and connect with others in your region.

Registration is required. Please register HERE:

If you have any questions, please reach out to Hayley Thornton (HaleyT@SoftBones.org), Ann Haak (Ann@SoftBones.org) or Cindy Reasor (Cindy@SoftBones.org).

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease.

HPP AND ME Live Zoom Chat
2024-07-25 15:00 - 16:00 (America/New_York) | Online
Register for your spot today!

Join us on July 25th at 3 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.

Appy Hour
2024-07-24 15:00 - 16:00 (America/New_York) | Online
The myHPP app was developed by patients and physicians to transform patient care and inform hypophosphatasia research. It puts patients in charge of tracking their health and makes them a valuable partner in research for better HPP treatment and care.

Come join us on July 24th at 3 PM Eastern, over Zoom, to learn more about myHPP and how to navigate the app. Learn from tech savvy patient users and feel free to ask questions along the way. Join us in taking actionable steps to transform healthcare. Download the app in the Apple Store or Google Play Store today!

Registration is required. Please register here.

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

Central Region Meeting
2024-07-21 13:30 - 16:30 (America/Chicago) | Sump Memorial Library, 222 N Jefferson St., Papillion, NE, 68046, United States
Central Region Meet-Up Opportunity
Do you live in Arkansas, Colorado, Kansas, Missouri, Nebraska, North Dakota, Oklahoma, South Dakota, Wyoming?

Join Soft Bones’s Region Lead, Kara Schweiss, for a Central Region Meeting on Sunday, July 21, 2024 at Sump Memorial Library. From 1:30 – 4:30 PM, connect with other members from your region. Lunch will be provided. All Central Region members and families are welcome to come to this local get-together. This is a time to connect and meet your local support system.

Date: Sunday, July 21, 2024
Time: 1:30 PM – 4:30 PM Central
Address: Sump Memorial Library (South Meeting Room)
222 N Jefferson St, Papillion, NE

Registration is required and will close on July 17, 2024. Register HERE.

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

Appy Hour
2024-07-18 20:00 - 21:00 (America/New_York) | Online
The myHPP app was developed by patients and physicians to transform patient care and inform hypophosphatasia research. It puts patients in charge of tracking their health and makes them a valuable partner in research for better HPP treatment and care.

Come join us on July 18th at 8 PM Eastern, over Zoom, to learn more about myHPP and how to navigate the app. Learn from tech savvy patient users and feel free to ask questions along the way. Join us in taking actionable steps to transform healthcare. Download the app today in the Apple Store or Google Play Store.

Registration is required. Please register here.

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

Northwest Region Meeting
2024-07-13 10:00 - 12:00 (America/Anchorage) | Kaladi Brothers Coffee, 6901 E Tudor Rd, Anchorage, AK, 99507, United States
Northwest Region Meet-Up Opportunity
Do you live in Alaska, Idaho, Northern California, Montana, Oregon or Washington?

Join Region Lead, Ann Haak, on Saturday, July 13th in Anchorage, Alaska. Time and location will be announced soon. Come meet and connect with other members from your region. A OneSource Case Manager will be available to answer questions and provide support.

Date: Saturday July 13, 2024
Time: 10 AM Alaskan Time Zone
Address: 6901 E Tudor Rd, Anchorage, AK 99507

Registration is required. The deadline to register is Wednesday, July 10, 2024. Please register HERE.
If you have any questions, please reach out to Ann@SoftBones.org or Cindy@SoftBones.org.
This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease.

2024 Soft Bones National Patient Meeting
2024-07-12 17:30 - 2024-07-13 17:00 (America/New_York) | Great Wolf Lodge, Mason Ohio, 2501 Great Wolf Dr, Mason, OH, 45040, United States
Join us for our 2024 Soft Bones National Patient Meeting on July 12th–July 13th, 2024, in Mason, OH. 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.

Meeting Venue
Great Wolf Lodge in Mason, OH
Address: 2501 Great Wolf Dr, Mason, OH 45040
Phone: 800-913-9653

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 501c3 nonprofit organization that funds events, such as this through ongoing fundraising efforts. When requesting a travel grant, you use your best judgment so the funds can be dispersed 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 required and will close on July 1, 2024. Currently, there is a waitlist. If you are interested, please get in touch with us at patientmeeting@softbones.org.

Brought to you in part by:

Headline Sponsor

Star Sponsor

Community Builder Sponsors

Midwest 2 Region Zoom Meeting and Chat
2024-06-27 19:00 - 20:00 (America/New_York) | Online
Do you live in Kentucky, Michigan, Ohio, or West Virginia?
Join Region Leads Sharon Talkington and Nichole Macknight for a virtual Zoom Meeting on June 27th at 7 PM Eastern. This is open to all in the Region. As the National Patient Meeting is approaching, this is a great opportunity to connect with others who will be attending as well.

Registration is required. Sign up below:
https://us06web.zoom.us/meeting/register/tZwkc-mtqD8rGd06Nrcw_4sysAgk4WJJOJrh

If you have any questions, please reach out to cindy@softbones.org

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease.

HPP AND ME Live Zoom Chat
2024-06-20 20:00 - 21:00 (America/New_York) | Online
Register for your spot today!

Join us on June 20th at 8:00 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.

Midwest 1 Region Zoom Meeting and Chat
2024-06-12 20:00 - 21:00 (America/New_York) | Online
Do you live in Illinois, Indiana, Iowa, Minnesota, or Wisconsin?
Join Region Leads, Cindy Reasor and Nicole Belting, for a virtual Zoom Meeting on June 12th at 8 PM Eastern/7 PM Central. As the National Patient Meeting is approaching, this is your opportunity to connnect with others who will be attending. This is open to all in the Region even if you are not attending the NPM in Mason, OH.

Registration is required. Sign up below:
https://us06web.zoom.us/meeting/register/tZMtf-2upzgqHtOnC3y1jJWLaGaCRwCJWFP0

If you have any questions, please reach out to cindy@softbones.org

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease.

Southwest Region Zoom Meeting and Chat
2024-06-09 19:00 - 20:00 (America/Chicago) | Online
Do you live in Arizona, Hawaii, Nevada, New Mexico, Southern California, or Utah?
Join Region Leads Amy Britt and Sue Krug for a Region Zoom Meeting/Chat on June 9, 2024, at 7 PM Mountain Time/6 PM Pacific Time. Connect and chat with local members about life and HPP. Registration is required. We hope to see you there!

Registration is required. Register below: https://us06web.zoom.us/meeting/register/tZIocuquqDkjHdcjnzSyPYHoLiDnBkBrA75U

If you have any questions, please reach out to cindy@softbones.org

This meeting is sponsored in part by Alexion, AstraZeneca Rare Disease.

Denim & Diamonds - Registration Open
2024-05-18 17:30 - 21:30 (America/New_York) | Harvest Hall, Chester, NJ, 100 Rte 24, Chester, NJ, 07930, United States
Registration is now open! It’s time to put on your cowboy boots and dance for a great cause! Join us for the 2nd Annual Soft Bones Denim & Diamonds fundraiser on Saturday, May 18th, 2024, at Alstede Farms’ Harvest Hall, in Chester, NJ. There will be live music by Glenn Roberts’s Cranked Up Country Band, dancing, auction items, games, a campfire, and more!

Register for Denim and Diamonds below or pay at the door:
https://app.donorview.com/r3Rwk

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

HPP AND ME Live Zoom Chat
2024-05-16 13:00 - 14:00 (America/New_York) | Online
Register for your spot today!

Join us on May 16th at 1:00 PM EDT 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.

Southeast Region Meeting/Chat
2024-04-23 19:00 - 21:00 (America/New_York)
Do you live in Alabama, Florida, Georgia, Mississippi North Carolina, South Carolina, or Tennessee?
Then, join Region Leads, Blynda Kellner and Scott Galvin for a Region Zoom Meeting/Chat on April 24, 2024, at 7 PM Eastern. This is an opportunity to meet the newest Region Lead, Scott while conversing with HPP members in the Region. Join in on the conversation!
Registration is required. Please register using the link here.

HPP AND ME Live Zoom Chat
2024-04-22 20:00 - 21:00 (America/New_York) | Online
Register for your spot today!

You are invited to our next HPP AND ME Zoom Chat on April 22, 2024, at 8 PM Eastern. Meet others within the HPP Community and connect. Come join the conversation!
Click here to register.

HPP AND ME Zoom Tutorial
2024-04-09 15:00 - 16:00 (America/New_York) | Online
Register for your spot today!
Soft Bones will be hosting an HPP AND ME Zoom Tutorial on April 9, 2024, at 3 PM Eastern. Learn how to navigate our community forum and join the conversation. Registration is required. We hope to see you there!
Click here to register.
