ForeBatten Foundation @forebatten
Our mission is to fund rare disease medical research and compassionately support the Batten community. ForeBatten2023.givesmart.com Scottsdale, AZ Joined November 2017-
Tweets163
-
Followers250
-
Following85
-
Likes126
We are excited to announce two new members to our Scientific Advisory Board. Russell Gotschell has 25+ years of drug discovery/development experience. Similarly, Gavin Malenfant has 30+ years in rare disease drug development. We welcome Russell and Gavin to our team fighting CLN3
If you like #Championships, we have six opportunities for you! #collegeworldseries #superbowl2024 #themasters #finalfour #CollegeFootball ForeBatten2023.givesmart.com
Thank you for your support @RealJasonKidd! #mavs #dallasmavericks #dallasmavs
Thank you for your support @RealJasonKidd! #mavs #dallasmavericks #dallasmavs
Check out this item just added to the auction! Lookout Mountain, Georgia #golfgeorgia #georgiagolf #golfforgood #lookoutmountain. e.givesmart.com/events/w3q/i/_…
Hey @rushisaband and @rushtheband fans - check out this auction item: 3 players will join #AlexLifeson for a great day of golf, laughs, and maybe some music at a golf club in Toronto or Scottsdale AZ! Don't miss out on a #onceinalifetime experience! e.givesmart.com/events/w3q/i/_…
The auction is LIVE! Head over to the auction site and bid on something that catches your eye! ForeBatten2023.givesmart.com
Once again, @GolfDigest and @feedtheball have provided a generous and thoughtfully crafted article depicting the auction as well as updates on Amelia & Makenzie and the Kahn family's journey with Batten. Give it a read. Bidding starts tomorrow!
Once again, @GolfDigest and @feedtheball have provided a generous and thoughtfully crafted article depicting the auction as well as updates on Amelia & Makenzie and the Kahn family's journey with Batten. Give it a read. Bidding starts tomorrow!
Pamper yourself with a stay in an Oceanfront Prime Suite @FourSeasons. Register now, auction starts on 9/20! #wailea #luxuryresort e.givesmart.com/events/w3q/i/_…
NEW this year! Stay and Play at Sage Valley Golf. e.givesmart.com/events/w3q/i/_… #Golfsouthcarolina #southcarolinagolf #sagevalleygolf #Golf
Here’s one for @warriors fans! Court-side seats + VIP Club. e.givesmart.com/events/w3q/i/_… @warriorsviews #warriorfans #goldenstatewarriors #warriors
Rare opportunity! Golf for 4 at Friars Head. #top10golf #golfforgood #foursome e.givesmart.com/events/w3q/i/_…
Dreaming of attending a championship? Bidding on #SuperBowl, #collegefootball championship, #finalfour and #masterstournament starts next week! ForeBatten2023.givesmart.com
Bidding on Take A Swing Fore Batten online auction starts in just ONE week! See what has been called "the finest online golf auction in the world!" ForeBatten2023.givesmart.com We are taking a swing at Batten disease and aiming for a cure! #golfauction #RareDisease #golfforgood
Dreaming of your team in #SuperBowl? Bidding starts on 9/20 to win tickets. Register now! #NFLKickoff #NFL ForeBatten2023.givesmart.com
It's #CollegeFootball kick off weekend! Dreaming of your team going to the #nationalchampionship? Register now! Bidding on tickets starts 9/20/23 ForeBatten2023.givesmart.com
Win dream vacations, access to #exclusive golf courses, and #celebrity golf experiences at our 6th annual Take a Swing Fore Batten online auction! Register now and keep an eye on your favorite items. ForeBatten2023.givesmart.com
Fried Egg Golf @fried_egg_golf
105K Followers 851 Following A deeper level of golf. Tweets by: @AndyTFE & @willknightsTFE — Learn more about Fried Egg Golf: https://t.co/thjKId5DL3
Nicole Rich @njrchfoundation
603 Followers 1K Following Once you choose hope, anything is possible. #letsbeatbattens #richsistersbeatingbattens
Alan Shipnuck @AlanShipnuck
114K Followers 4K Following 25 years on the golf beat for SI, now executive editor at the Fire Pit Collective. Author of 9 books, including PHIL and LIV AND LET DIE: https://t.co/jb51UdOKRC
Philip Palermo @Philip_Palermo
2K Followers 1K Following Father of a child w/ CLN1 (Batten Disease). Video for @getfandom @tvguide @gamespot. Formerly of Engadget and Reviews dot com. (He / Him)
Jen VanHoutan @FarnieVanHoutan
594 Followers 834 Following Mom of 4. Batten disease & rare disease advocate 💙💜 Loyola Chicago & John Felice Rome Center alum
Mel Hall 💙 @melhall10
3K Followers 3K Following Mum of 2 amazing boys. Proud Area fundraiser for Acorns Children’s Hospice. Hoping for a cure of Batten Disease one day very soon ❤️ (views all my own)
Jonathan Cooper @Batten_PSDL
753 Followers 634 Following Leads the PSDL at Washington University School of Medicine, in St Louis working to understand and devise therapies for Batten Disease. Views are my own.
Gail Rich @mammyrich19
220 Followers 383 Following Co-Founder of ‘The Nicole & Jessica Rich Foundation’. Raising awareness & funds for Batten Disease after our two beautiful girls were diagnosed in late 2016💗
JHH @jangoknows
665 Followers 2K Following Nashville Native living on Red Dirt. University of Oklahoma Alum, I bleed #Titans Blue. Thunderstorm Enjoyer, Queso Blanco Believer. #aintlifegrand
Thahoo @Thahoo529765
100 Followers 1K Following
Love To Emma @Lovetoemma
3 Followers 41 Following Finding Hope for Batten Disease, a rare genetic disease. On a race to fund a cure and eradicate Battens once and for all. #lovetoemma
Danny's Dose @dannys_dose
517 Followers 2K Following Campaign to change Emergency Treatment Protocols in every state for all requiring specialized care. (501C3)
Niko Mallon @NikoMallon
13 Followers 29 Following
aj @lowen_a
173 Followers 4K Following
D141310 @D1413101
2 Followers 46 Following
Anthony Ferrandino @drewshopefamily
47 Followers 70 Following
Peter McDermott @PeterMcD19
304 Followers 2K Following Motor City born, Midwest roots, and educated in the South. Red Wings, Lions, Tigers and Go Blue. Husband and Father
Steve Watson @SMW1001
45 Followers 423 Following
Jim Morris @shrimps1107
114 Followers 2K Following
Matt Ziance @MattZiance
2K Followers 4K Following 🏆 2x Emmy Award Winner | ⛳️ Avid but Average Golfer | Work = @CriticalMass | Previous stops @NBCSports @GolfChannel @NBCOlympics & @UnderArmour.
Jarrad Glennon @JarradGlennon
59 Followers 1K Following
Matt Suszan @Sparty0n23
0 Followers 262 Following
Fisher & Fisher Solic.. @FisherFisherLaw
3K Followers 3K Following Property, commercial and family lawyers. #local #trusted #solicitors . Call 02830261811 #Belfast #Newry #Newcastle #Rathfriland #Kilkeel #Donaghadee
Dean Lundquist @deanlundquist
210 Followers 1K Following
Tony Perotti @TonyPerotti
643 Followers 2K Following MPA from Rockefeller College of Public Affairs & Policy / Former DI WBB Coach
American Crypto @Camo_crypto
120 Followers 841 Following
Michael M. Gallagher @MGallagher1977
684 Followers 3K Following Texan. Houstonian. Lawyer. Golfer. Most posts concern sports or movies. All thoughts are mine alone. “But d—- the game if it don’t mean nuttin . . . .”
Brian T @tmainaz
59 Followers 223 Following Investor, traveler, and fan of perpetually bad NY sports teams
Casey Walsh @PCaseyWalsh
240 Followers 5K Following Born and raised in Attleboro. Now a proud husband and dad living in Franklin, MA.
Tim Zielenbach @TZielenbach
1 Followers 3K Following
Coby DuBose | DuBose .. @DuBoseDefense
2K Followers 1K Following Clemson Tiger | Your Houston Criminal Defense Laywer Golf, Winners, Clay Pigeons. It took me years to get those souvenirs.
Ethan Bowers @Ebowers2
242 Followers 609 Following
BTuck @BronsonT518
463 Followers 2K Following Updates on my kiddos, BBQ, the Sooners and whatever other non-poker events are crossing my mind.
Bobby Jones @CU_TrialLawyer
267 Followers 480 Following Proud husband & father. Lover of golf and college football. Fighting for the hard working people of South Carolina.
Terry Nance @nance410
123 Followers 103 Following 410 sprint car fan. PA Posse. National parks -38 done. Golf Digest Top 100 courses quest. Ohio State Buckeye.
TO @hoosier_to
176 Followers 1K Following
Mitchell Kon @BialystockMax
62 Followers 896 Following
William Spence @wlspence
135 Followers 286 Following University of Virginia graduate and lifelong Wahoo, avid golfer and father of an amazing son.
Andy Edgington @edge_wireless
61 Followers 798 Following
Gavin T. Malenfant @GavinTMalenfant
0 Followers 2 Following
Jeff Merchant @jeffmerc0823
33 Followers 84 Following
B1234 @D19B1234
218 Followers 2K Following
Brenda Brown @AllieBrenda
341 Followers 2K Following
Sanford Research @SanfordResearch
889 Followers 391 Following Innovating healthcare through cutting edge science
Thomas Balderston @TommyBalderston
567 Followers 2K Following Partner @bebullish | Marketing + Investment
MANZI Ndamukunze @MNdamukunze
434 Followers 3K Following Renforcement des Capacités - AT en finance inclusive (capacity building-TA in i.f.) Engaged for Persons Living with a Rare Disease (PLWRD) with CENTRE-ALLIANCE
Gary Longtin @gary_longtin
303 Followers 305 Following Karol's husband and retired aerospace engineer. Illinois to San Diego to AZ. Passionate about travel, golf and the outdoors. Go Illini
James Cooper @jamespaso
139 Followers 651 Following
M Stenn @stennnerud
27 Followers 573 Following a father, a friend, a lawyer, a Minnesota sports fan. Minnetonka golf and hockey dad.
Fried Egg Golf @fried_egg_golf
105K Followers 851 Following A deeper level of golf. Tweets by: @AndyTFE & @willknightsTFE — Learn more about Fried Egg Golf: https://t.co/thjKId5DL3
Nicole Rich @njrchfoundation
603 Followers 1K Following Once you choose hope, anything is possible. #letsbeatbattens #richsistersbeatingbattens
Zac Blair @z_blair
48K Followers 375 Following I have an amazing wife Alicia Blair, 2 crazy sons CB and Wild Bill & 2 awesome dogs Teddy Bear Blair and Piper :) … oh and I play golf
Alan Shipnuck @AlanShipnuck
114K Followers 4K Following 25 years on the golf beat for SI, now executive editor at the Fire Pit Collective. Author of 9 books, including PHIL and LIV AND LET DIE: https://t.co/jb51UdOKRC
Jen VanHoutan @FarnieVanHoutan
594 Followers 834 Following Mom of 4. Batten disease & rare disease advocate 💙💜 Loyola Chicago & John Felice Rome Center alum
Jonathan Cooper @Batten_PSDL
753 Followers 634 Following Leads the PSDL at Washington University School of Medicine, in St Louis working to understand and devise therapies for Batten Disease. Views are my own.
Gail Rich @mammyrich19
220 Followers 383 Following Co-Founder of ‘The Nicole & Jessica Rich Foundation’. Raising awareness & funds for Batten Disease after our two beautiful girls were diagnosed in late 2016💗
Prof Sara Mole @SaraEMole
1K Followers 1K Following UCL Professor & Envoy for Gender Equality. Equity brings excellence. Understanding & treating the neuronal ceroid lipofuscinoses/Batten disease.
May Khanna @may_khanna
2K Followers 3K Following @UF Faculty & Assistant Dean of Innovation and Entrepreneurship. Mother of 3. Chemical biology. Member of @AcadofInventors. CSO Regenerix,CEO Eternum Analytics
Steph Hughes @StephHu83664319
93 Followers 92 Following
Ruchira Singh @RuchiraSingh13
1 Followers 15 Following
Sharon King @SharonK68391237
22 Followers 37 Following
Josh Bills @jrbgolfs
1K Followers 1K Following All paintings are my original oils paintings. If interested check out my website.
Crazycanuck1985 @Crazycanuck1985
4K Followers 741 Following ⛳ @2K NextMaker | YouTube Partner | Twitch Affiliate | @PGATOUR2K Course Designer | Teacher | Husband | #GirlDad Business: [email protected]
Derek Duncan @feedtheball
6K Followers 890 Following Architecture Editor @GolfDigest. Host, Feed the Ball podcast. University of Colorado. Dad. https://t.co/DXDVheYkk0…
michelle hastings @chell_hastings
74 Followers 68 Following Professor and Director Center for Genetic Diseases at The Chicago Medical School, Rosalind Franklin University, studying RNA biology and therapeutics
Stephane Lefrancois @Stephane_MTL
217 Followers 293 Following Cell biologist @inrsciences studying neurodegenerative diseases, husband, father of 2
Shannon Macauley @macauleylab
4K Followers 2K Following Associate Prof, PhD, wife, mom. Alzheimer’s disease | diabetes | brain metabolism | sleep | I ❤️ lactate | lysosomal storage diseases | she/her
Michelle Hastings @HastingsLab
682 Followers 960 Following RNA biology and therapeutic discovery lab. @UMichMed, @UMPharmacology, @UMichRNA- views are our own
Cameron White @Chip7830
36 Followers 82 Following Proud dad to two wonderful daughters and husband to a terrific wife; golf lawyer as well as ardent student of the game;
ASGCA Home Offices @ASGCA
4K Followers 137 Following Since 1947, the American Society of Golf Course Architects is the world’s largest professional organization of golf course architects; GIS Presenting Partner.
Stan Kahn @kahnfused
25 Followers 52 Following
Liams Lodge @LiamsLodge
2K Followers 2K Following A new children's respite, step-down and palliative care support centre for Ireland's children affected by complex, rare-genetic & life limiting conditions.
Tony Heffernan a DAD @BeeForBattens
8K Followers 7K Following DAD of #Angels Saoirse, Liam #LoveMaims #WorkWifeBalance Creator @BUMBLEance Recipient #PeopleOfTheYear #Pride_of_Ireland. #SUAF #CFC #IDC,former Ships #Captain
BUMBLEance - Children.. @BUMBLEance_IRL
11K Followers 9K Following We provide free, safe & comfortable transport for Ireland’s youngest patients in a fun environment 🐝🚑 Get Involved! https://t.co/l8cX7JdOn2
Ionis @ionispharma
5K Followers 488 Following Delivering innovative medicines to patients where no others have proven effective or existed. See our community guidelines: https://t.co/HWH9JQR41u
Duensing Foundation @duensing_fdn
369 Followers 11 Following The Brian Duensing Foundation is dedicated to providing hope & support to families battling cancer or serious illness by increasing awareness & by raising funds
𝓛𝓲𝔃 𝓡𝓲.. @lizrich21
499 Followers 560 Following Family is everything Raising awareness of Batten Disease for our precious Nicole &Jessica who have this life limiting neurodegenerative disease @njrchfoundation
Amicus Therapeutics @amicusrx1
2K Followers 532 Following We are a global biotech company focused on discovering, developing & delivering high-quality medicines for people living with rare diseases.
Gina - I Care about R.. @BattenHope
336 Followers 544 Following Every. Day. Awesome. 4xDragon Mama. SMU 🏈fan for life. Jojo’s Batten HOPE advocate👓 Miracle finder. Rare disease fighter 🥊
Nationwide Children's.. @NCHforDocs
5K Followers 2K Following Sharing pediatric research, clinical innovation and education. Join us in advancing the conversation on child health. Consumer content: @nationwidekids
Benevity @benevity
13K Followers 2K Following We're the global leader in workplace giving, volunteering & grantmaking programs that engage your people and make meaningful social impact.
Nationwide Children's.. @nationwidekids
38K Followers 8K Following Nationwide Children's Hospital, one of America's largest pediatric hospitals and an international leader in #research. A follow does not equal endorsement.
Laura King Edwards @lkedwards11
635 Followers 944 Following Writer. Runner. Artist. Adventurer. Dreamer. Believer. | RUN TO THE LIGHT author. Content Marketing Director @wrayward. Co-Founder @taylorstale. #TEDx speaker.
Sebastian Velona @CureBattenCLN8
173 Followers 937 Following Sebastian Velona Foundation raises funds for BattenCLN8 research. It is a project of The Giving Back Fund, a 501(c)(3) charity, so donations are tax deductible.
Christian Lundin @ChristianLundin
13 Followers 18 Following
Beatbatten @Beatbatten
518 Followers 495 Following Stichting Beat Batten! heeft als doel te komen tot behandeling of genezing van de zeldzame en fatale stofwisselingsziekte batten/ncl3 (kinderdementie) bij kids.
Cell Stem Cell @CellStemCell
56K Followers 69 Following A monthly journal at the forefront of stem cell science and policy. Posts & opinions from Editor-in-Chief, Dr. Sheila Chari
haleysheroes @haleysheroes
62 Followers 268 Following Haley’s Heroes Foundation wants to increase awareness and raise funds for research for Batten Disease, specifically CLN1.
Emily Griese @EmilyGriesePhD
53 Followers 41 Following Researcher. Educator. Data Analyst. Lifelong Learner.
Weimer Lab @DrJWeimer
494 Followers 233 Following Scientists at Sanford Research working to understand developmental processes in normal & rare disease brains as well as developing treatment for these diseases
RareConnect @RareConnect
19K Followers 5K Following 🌐Connecting #raredisease patients globally at https://t.co/v6rTTK0X6I. 💻Website help at @RareConnectSup.
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Rare Diseases Clinica.. @rarediseasesnet
8K Followers 507 Following NIH-funded network fostering collaborative research among 20 teams of researchers, patients, and clinicians, each focused on a group of rare diseases.
RDLA @RareAdvocates
6K Followers 3K Following A program of the EveryLife Foundation committed to growing the patient advocacy community and working collaboratively, thereby amplifying the patient voice!
Rare Diseases Ireland @RareDiseasesIE
4K Followers 1K Following Equitable access to healthcare and opportunity for all! RDI - advocating for equitable access for the 300,000 people in Ireland living with rare diseases.
RareDiseaseFdn @rarediseasefdn
9K Followers 517 Following Changing the lives of patients affected by rare & undiagnosed diseases through social support, advocacy & treatment-focused research. https://t.co/qWTTVoKeyL
Sammie Smiles @BringSamSmiles
224 Followers 198 Following Sammie is a sweet little girl who is afflicted with Batten Disease, a rare terminal degenerative brain disease. Please help us raise awareness.
Richard @Nicholas_Dad
269 Followers 447 Following Travel Agent. Nicholas had the ability to show others how to live life.#Travelhigh #BattenDisease #RIPNicholas Facebook at Burninturletravel
PGA TOUR Communicatio.. @PGATOURComms
162K Followers 601 Following Official account of the PGA TOUR Communications department.
Jamie Fischer @JamieFgolf
600 Followers 898 Following INSTA @JamieFgolf Conway Farms GC & Indian Ridge CC Dir. of Instruction, Golf Digest&LPGA Top 50 Women Teacher, Longhorn, Proponent Gp. Adidas & Callaway Staffs
BMW Championship @BMWchamps
23K Followers 257 Following The penultimate event of the FedExCup Playoffs. #BMWCHAMPSStill six hours left to bid on tee times for many of the best private golf clubs on the planet....and support much-needed research through @forebatten.
It's time for the annual @forebatten fundraiser to support vital medical research and one very brave family (bit.ly/46mtsG8). Wanna play Chicago GC, Sand Hills, Fishers Island, Grove XXIII, Ballyneal, Tara Iti, Crystal Downs? Bidding is live now! e.givesmart.com/events/w3q/i/
The Sanford Research Green Committee in Sioux Falls organized two cleanups for #WorldCleanUpDay at Pioneer Park and Sertoma Park!
@JStewGolf I would have to agree. The quality is incredible.
@feedtheball Just registered and watched a bunch. Thanks!
@JStewGolf @feedtheball The only thing that would come close is the GCSAA auction every spring, but that’s more of a volume play. This is the best golf centric auction of the year..
@feedtheball I’m not sure I’ve seen a better collection of golf courses in one auction?
Today is International Batten Disease Awareness Day. To learn more about CLN3 Batten disease and the research we are doing in the @HastingsLab, check out our latest publication. I’m honored to work with such an amazing team! @MattyStratty22 @DrJWeimer @forebatten
Protracted CLN3 Batten disease in mice that genetically model an exon skipping therapeutic approach #MTNA dlvr.it/Sq9fjM
Excited to be a part of this new Society! Good things to come! @RNA_Therapeutics prweb.com/releases/the_s…
Happy to have played a small role in this work.
The Batten disease protein CLN3 is important for stress granules dynamics and translational activity jbc.org/article/S0021-… Our fun collaboration with @Stephane_MTL and @PeterMc66323620 to link Stress granules defects and Batten disease.
The Batten disease protein CLN3 is important for stress granules dynamics and translational activity jbc.org/article/S0021-… Our fun collaboration with @Stephane_MTL and @PeterMc66323620 to link Stress granules defects and Batten disease.
Amelia’s making improvements today. Slowly dialing back the extra oxygen and her heart rate is getting better. Still breathing hard and she’s on meds to address multiple potential sources of pneumonia. Hoping for continued improvement! #BattenDisease
Congrats to @forebatten for another successful auction. And thanks for continuing to raise funds for #BattenDisease research!
Just wow… Once again we are left speechless following Take a Swing Fore Batten 5. Our annual online auction (many dubbing the best auction in golf) has raised the bar for a 5th consecutive year. TASFBV reached more enthusiastic supporters than ever before and raised over $1.4M!
Don’t miss out on Item #40 in this year’s incredible @forebatten auction. Golf for 8 plus an on site cottage stay here at Sand Ridge GC in beautiful Cleveland!
.@forebatten always hosts the best charity golf auction of the year. Want to have lunch with Jack? How about play Sand Hills, Merion, Crystal Downs, Shoreacres, LACC, Friars Head, Valley Club, Sleepy Hollow & tons more ultra-private courses? Check it out: e.givesmart.com/events/ovB/i/
An important new model! There are great advantages to having a genetically accurate model of disease with a brain that is larger and more complicated than mice! Congratulations to all involved and thanks to those that funded it! @DrJWeimer @DrDavidPearce
First reported genetically engineered large animal model for CLN2 #BattenDisease with many characteristics of disease. This will help understand the disease more and also advance therapies as a pig is a significant upgrade to mouse models #raredisease pubmed.ncbi.nlm.nih.gov/36100791/
First reported genetically engineered large animal model for CLN2 #BattenDisease with many characteristics of disease. This will help understand the disease more and also advance therapies as a pig is a significant upgrade to mouse models #raredisease pubmed.ncbi.nlm.nih.gov/36100791/
@LinksGems @forebatten Crystal Downs = Great White Buffalo
@LinksGems @forebatten Jon, the round with you at sleepy hollow is at some serious money already. Nicely done!
@LinksGems @forebatten Lost Rail in Omaha is a steal at $610.
@LinksGems @forebatten That Sleepy book is fantastic. I have it. Love that place.
@LinksGems @forebatten Not a golf thing but those Ali/Foreman gloves would be sweet
Trends for United States
You might like
